Formal diagnosis? Just feel better? How do you know?

[Mama Cat]

Hi, I'm new here and not sure that I have CD but I am thinking it is a strong possibility. The weird thing is that I've never really shown "symptoms" per se except 1) when I was a teenager I had BAD eczema that "bubbled" (yes it was very icky) that I now think might have been DH, and I've had "normal" scaly eczema all my life; 2) I was diagnosed with IBS as a young adult, and have always had digestive "issues" though never really REALLY bad. I used to have episodes of losse bowels when I was young, but these days I often get constipated. I often have episodes of not-severe but definitely noticeable pain in my gut that I've just learned to ignore as the doctors never really could track it down and it really wasn't too bad. (I'm 99% sure nobody ever tested for celiac). 3) some female stuff - irregularity and spotting, though that might just be my age (I'm in my 40s).

Anyway I've got some "middle-aged spread" and to lose weight, I tried the South Beach Diet in 2005. During Phase I of that diet you are to eat NO carb-heavy foods such as grains, potatoes, etc. Anyway though many people find this part of the diet very difficult and it leaves them feeling cranky and depleted-feeling, I had the opposite reaction. My energy just SOARED and my skin cleared up for the first time in years (the only other time it had ever really got better was when I was pregnant). And for once I started having normal periods. And although P1 of South Beach tends to make many people constipated, for me it was the opposite! The constipation totally cleared up. It was like a miracle.

But you only stay on Phase I for two weeks, after which you start slowly re-introducing grains etc. And I started not feeling as well. Not bad, just not as great as I had been feeling. As a result it was harder to stick to the diet and eventually I just gave it up altogether and put the weight back on (and some more too!).

I wondered then if maybe I was hypoglycemic or something, and cutting out carbs was causing the energy rush.

Then I read somewhere about Celiac and wondered if that might explain this. I've thought about it on & off over the past two years and just recently, after a bad period of constipation I thought I'd try something like South Beach again. But to try out this Celiac theory, I'd let myself have some GF grains, too.

I've gone 5 days without any gluten sources (I've been very careful), and again - my skin cleared up, and my energy soared (not much change in digestion, though). Until last night. My daughter has a gingerbread house that she made in school and she wanted to cut into it rather than save it for Christmas, as she was worried that it would get stale. So we cut into it, and I had a small piece.

This morning I had a light eczema-type rash on my face, a bit of rash on my wrist, and pain in my gut.

What do y'all think? Sound suspicious or what?

My next question is whether it is really necessary to get a definitive diagnosis of CD. I am fairly convinced myself (though not 100%). What is the down-side of NOT getting a diagnosis? Is there any?

I've read that I'd have to stay on wheat for a while to get a diagnosis, and right now that doesn't sound too appealing. I feel so much better without it. Will a doctor give you a diagnosis on the basis of symptom-change alone? As I said it's not really that I had "symptoms" per se. I didn't feel bad before, just better without gluten.

[the sensible celiac]

Hi Mama Cat, Welcome.

Everything you say does sound very much consistent with the possibility you might have celiac disease. You've done some great detective work to figure this out on your own.

The two most common types of testing for celiac disease are a biopsy of the small intestine which is expected to show blunted and damaged villi, and some blood tests that look at antigens your immune system produces in the misguided defense against its own tissue.

As I understand it, the biopsy is more likely to still give an indication of celiac disease in someone that has recently gone GF, as the typical damage in the small intestine takes at least a month, possibly 6 months to heal. Since the antigens found in the blood drop off rather quickly after a person goes GF, that test is more likely to return a false negative if a celiac has been eating a GF diet.

On the other hand, for those who are still eating gluten, the blood tests are considered less reliable in the first place anyway. This is why the biopsy has long been considered the gold standard for diagnosing celiac disease.

There have been some advances in testing since I was diagnosed about 9 years ago. So if you think you want to be tested using drawn blood, certainly the sooner the better.

And yes, it is generally considered true that if you go GF before testing you are likely to get unreliable test results.

I think the best suggestion I can offer is that you try to persuade your MD to refer you for an endoscopy as soon as possible.

Also, consider searching on Google Images for photos of Dermatitis Herpetiformis, this might make it easier for you to decide if that is the problem you are having. To make it easier, here is a Tiny URL you can use:
http://tinyurl.com/u9w6b

Good luck and please keep us posted.

Steve

[CupCaked]

Hi everyone,

 I'm 58 years old, married forever with no kids (our choice.) I have a cat and a dog, and I've lived in the Northeast all my life.  I'm a recently (and happily!) retired supervisor for the NJ state judiciary.

I've been scouring the Internet, reading and asking questions, since I became suspitious that celiac disease might be a problem for me.  I'm finding that some of the symptoms are SO me ... years of varied intestinal problems, especially after eating anything with gluten ... fatigue, a fuzzy brain sometimes after eating certain foods, a history of undiagnosed general health problems.  I have diverticulosis, and I only know about that from a colonoscopy two years ago. 

While in my twenties, I was actually hospitalized with generalized bowel symptoms, a low grade fever that had lasted for about ten months when I was finally hospitalized, a SED rate that was high for no reason and other positive test results that could not point the way to a diagnosis.  Recently, I have had two serious spine surgeries, and I have read that celiac folks are sometimes finally diagnosed with the disease after having surgery, childbirth, stress, etc.  I'm wondering if this is what finally brought my problems to light.  I began having more regular bowel problems since then.

Anyway, I recently had a screening test for gluten sensitivity (fecal antigliadin IgA antibody,) and that came back positive.  In the meantime, I have to go food shopping with my reading glasses on so I can read all the labels.  I'm not at all near being "fluent" in knowing what I'm not supposed to have and what is okay to eat.  I even bought "Living Gluten-Free For Dummies, " which has actually been very helpful to me.

I started feeling better the next day after cutting out gluten from my diet.

[the sensible celiac]

Hi CupCaked, and welcome.  We are the same age, and I'm also recently retired after 28 years in datacommunications.

I was once married to a woman, and became a father 3 times in that phase of my life. Two of my children are still with us and are now adults with spouses.  I'm now living with my registered domestic partner in Palm Springs CA.  Besides eating a GF diet I'm also strictly vegan, which makes dining out fairly complicated.  My daughter also has celiac disease and is managing well with it. 

My mother died of stomach cancer recently after suffering extreme osteoporosis and digestive symptoms for many years.  Her doctors vacillated on whether she did or did not have celiac disease, she never tried a gluten free diet.

I've been diagnosed with diverticulosis too. In 2005 I began having very frequent urinary tract infections, a fairly uncommon thing for men, and after 8 months of dealing with a thoroughly incompetent urologist, I eventually was found to have a colovesical fistula, an unexpected and dangerous connection between my colon and urinary bladder.  I had a partial colectomy to remove the fistula in April 2006 and have not had a moment's trouble with diverticulosis since.

I guess it has been almost ten years now since I was diagnosed, so I've witnessed a gradual bit dramatic increase in both the knowledge about celiac disease in our society, and thankfully a wider range of gluten free products.

This forum has been around for quite a while, and there is a lot of information in these pages, but sadly there are few active members and even fewer that post regularly.  I'll keep at it because of the cumulative nature of knowledge, and I'm constantly applying my somewhat geekish knowledge of computers to ways of increasing the information content and usefulness of this site.

Please ask any questions you may have, your question is not going to look odd or strange here, and we'll try to help as much as we can.

Thanks for joining the forum!

Steve

[Sharon]

Hi Cupcaked.  I welcome you too, and probably only missed your earlier post due to my sometimes overwhelming computer illiteracy.  I'm also in the age category of you and Steve, but I'm still holding for a few more months at 57.  Also was married forever but decided to separate and divorce this past year which necessitated the exact opposite of slowing down and retiring.  Instead found a great job, relocated from Northern Idaho to Seattle, am near to my parents, one daughter and beloved Mariners.

I had sort of routine types of health problems starting about a dozen years ago, high blood pressure, migraines, some joint pain, never any stomach or bowel problems during most of it.  But I too eventually ended up in the hospital and was treated for prevention of what they thought was a heart attack that proved to be not true. (I still cherish their phrase "you have a great heart").  I had developed quite a bit of nausea for the preceding two weeks or so and so my doctor ordered an endoscopy following my release.  This was summer of 2004 and results came back with the flattened villi and suggested celiac.   The amazing thing is, I had also developed severe hip pain by then, could hardly walk, flirting with a wheelchair, and had been told I'd need serious spinal surgery.  6 days on the gluten free diet cleared up the bulk of the pain, wheelchair was returned and I don't have the blood pressure/migraine problems anymore unless I eat anything from a range of foods that I now can't tolerate.

I'm guessing my deceased grandmother had the condition, since in her later years her children would kind of smirk that she always complained of an upset stomach which they attributed to her saving canned foods too long as a result of depression era decisions.  I'm also guessing my 2 adult daughters may have it, given they're at least not very good processing dairy things--blood work on one was negative, and that was enough for her to keep eating what she wants--even though my blood work was negative too.

It's probably worth reading through as much as you can of previous posts on this website.  I'm more in the camp of being really strict with oneself initially about the diet when in doubt, because you can always make different decisions later.  I also greatly benefited from having a friend with the diagnosis who could instruct me on the zillion and one ways to get things cross contaminated.  The other thing I learned to watch for with my mentor's guidance was other foods that I was allergic to that could essentially cause the same range of symptoms in me as the gluten and which led me to eventually do some blood tests to determine other unknown foods to which I was allergic.  That has since saved me a lot of grief.

Anyway, good luck and ask whatever you need to.  I hope too other readers will maybe start posting more.

Sharon

[Molly]

I am new to this site.  I was diagonosed just a couple of months ago, biopsy and blood panel. 

My symptoms sound strange relative to what is "normal" for celiac.  I was getting very bad stomache pains - spasms, actually.  At first, I thought I must have had food poisoning.  I was out of state at my aunt's funeral - I ended up in the hospital with an abnormal CT - showing inflamation of the small intestine.  There was some thought it could be Chrones, or even just a virus.  I had no symptoms after that for about a month and half, and then I had another "episode."  By about the third episode, which was bad enough to send me to hospital, I had a GI consult.  My GI performed a endoscopy and colonoscopy.  The visual showed nothing unusual, but the biopsies and later blood tests indicated Celiac. 

I have been GF for a 2-3 months now, but have still had periodic episodes.  Following one of these, where I am vomiting until empty, I feel weak and sore, but eventually fine.  My GI doctor wants to talk more procedures, as he is not sure that this is the Celiac, or something else.  Does this sound at all familiar to anyone else?

I think maybe I have not been careful enough about screening my food.  For instance, I recently read that "natural flavoring" can contain gluten!  As if it the diet needs to get more complicated.  Also, even if I am careful to check going out to eat, I feel suseptible to mistakes.  My strange episodes do not seem to correlate to anyting in particular.  It is frustrating.

I don't mind changing my diet - I just want to feel assured that it is working, and I don't want to get sick like I have been.

Thanks for creating the site - Molly

[the sensible celiac]

You mentioned stomach spasms and pain before you were diagnosed. Throwing up is not really that far removed in terms of related symptoms. It is possible you are accidentally getting gluten. 

Keep in mind that many people develop temporary food intolerances when they first go on a gluten-free diet.  It is very common for newly diagnosed celiacs to become lactose intolerant after going gluten free.  Often this goes away after a while for some people, and perhaps a year later they can eat dairy again.   Could it be that foods making you ill contain dairy products?

[cmg]

I need help figuring out next steps for my 4 year old.

She always has been a kid who seems not quite well, but nothing specifically wrong.  She had a severe milk allergy as an infant and toddler, which I thought she had outgrown by about age 3.  She always has been a bad sleeper and had tonsils and adenoids removed to alleviate sleep apnea - which was diagnosed with a sleep study - just after she turned 3.  We recently have begun the process of having her evaluated for ADHD.  She always complains about things hurting -- her back, her knees, her leg, her foot, the list never ends.  And most recently, she is complaining about stomach aches all the time.  Beginning about 3 weeks ago, I was getting calls to pick her up early from camp because of bowel incontinence.  Also, she is very small for her age - she has gone from 45% at 1 year old to 20% at 2 years old to 3% at 3 & 4 years old.  All this in a kid who is really smart.  In 2 years of preschool all of her teachers have been amazed by her advanced cognitive ability.  My sister told me that it sounded similar to her friend's daughter who had been diagnosed w/ celiac.  So, I took my daughter to the doctor and asked for the blood test.  He clearly thinks I'm a complete neurotic, but did the test to appease me.  I just learned today that her result was negative.  In the meantime, I put her on a wheat-free diet -- I did not address all gluten -- and I was amazed at how well she responded.  The sparkle returned to her eyes, more energy, no longer whiny and clingy, more color in her face, hyperactivity declined to a point that I wondered whether to continue the ADHD evaluation, and when I asked her if her tummy hurt, she told me no, nothing hurts.  And her bowels seemed to be improve.  This is in just 3 or 4 days! 

I can't get an appointment with a pediatric GI specialist until mid-september; so, I let her eat wheat products again, knowing the importance of being on a "normal" diet for a biopsy; but all of her symptoms/behavior returned immediately.  So I took her off wheat agian - for 5 days now.  She is doing great.  So, now I have a negative blood result; I don't want to give my daughter wheat solely in the interest of getting a biopsy; but, I feel strongly that wheat/gluten is what is causing all of her issues.

Any suggestions?  I don't know what to do next!

[the sensible celiac]

Hi cmg,

You really seem to know exactly what you are doing, and I think you are doing it all right.

If I were in your situation I'd try to get the appointment with the pediatric GI moved to a sooner date.  I think that is the best solution to this dilemma.  There is a time and a place to be a nag, and where a child's health is concerned, well, it is the time and place.  What if you were to call every day to see if there were any cancellations?   After a few days of this you may see results.

I'm not certain how quickly the villi heal when a person with celiac disease starts a GF diet, but I think it takes weeks or months depending on age and severity of damage.

I don't envy you, being forced to feed your daughter things you know will make her feel poorly, but I think you are doing the right things.  It is great that you caught this at such an early age, she'll recover fast once all of this is over, and her health will bounce right back.

Good luck, keep us posted.

[HouseKat]

Have you been diagnosed?  Did you suffer a long time before your diagnosis?

Not officially.  In fact, a GI doc just announced me "definitely not celiac".

I first started having diarrhea in middle school and sometimes missed weeks of school at a time.  Our family doc at the time was clueless.  My symptoms seemed to go away during high school and then returned when I was in college.  I did a lot of reading about digestive issues trying to figure out what was wrong with me.  I asked doctors about celiac for over 15 years, but they all told me that I couldn't have it - I'm overweight - and wouldn't do the blood test.  A few years ago my grandfather was diagnosed as celiac, but my doctor at the time told me that it wasn't genetic, so that didn't matter.  In September, my aunt told me that she had it and that it is genetic.  I started reading up on celiac again and went on a gluten-free diet.

What symptoms did you have?

Diarrhea, constantly.  Vitamin deficiencies, B vitamins and iron were diagnosed, others likely undiagnosed.  Brain fog.  Depression and anxiety (my aunt also had these symptoms).  Joint pain, which a doctor diagnosed as rheumatoid arthritis, but went away when I went off gluten.  Chronic fatigue.  Many other symptoms.

What methods were used to test? Blood tests? Endoscopy?

Positive dietary response, confirmed by negative dietary response when GI doc made me go back on gluten for blood tests which were worthless because I had only been on gluten for four days.  No endoscopy was done because I'd been off gluten for three months at that point.  I've now been off gluten for four months and may do some Enterolab tests.


Kate

[the sensible celiac]

Wow, Kate, the doctors really put you through the wringer, or so it seems.

Welcome to the forum.  Please don't hesitate to join right in on any topic you see, old or new.

Lots of forums are aimed at current events, the latest news from Hollywood, or things of that nature.  But here we are talking about a nearly rare medical condition.  It once was considered rare, and maybe with about 1% of the population affected some would still call that rare, but it is important to everyone here!

So even if you see a topic that has been idle for a long time, don't hesitate to jump in and add or ask away.

From what I see in the logs, it seems that hundreds of people read each message, but few post.  So don't think what you might have to say won't matter, it will.  We never know how we might be helping someone else when we post things here, I think.

Thanks for joining and adding your experiences.

Steve

[MJSabin]

Hello,
First I'd like to say thank you for such a great resource site, I found it today and have been thrilled with what I've already learned. 
As most everyone else, I've been sick all my life with CD, however I wasn't diagnosed until 8 months ago.   Ten years ago I was told ("diagnosed") I had Fibromyalgia.  Mainly because of all the muscle pain I had that they couldn't explain.  I was on pain meds for 10 years (which Ironically enough had gluten in them) I was so sick I was barely functioning when a friend of mine gave me a book called "Dangerous Grains" (Fantastic book)  I went on a Gf diet right then and within a week saw a drastic improvement.  After being GF for a month I went back to my doctor, at that point I couldn't take a blood test but the results from the diet alone were enough for me and for him to give an official diagnosis.   In case I wasn't clear, let me say I do NOT have FM, that was a misdiagnosis.  Since being GF almost all of my health issues have either disappeared or greatly improved.  I no longer have any muscle pain, or insomnia (which were my two worst issues.) I had also been anemic, low of iron, had ulcers, acid reflux and asthma.  I have been amazed at some of the small things that I never would have thought were related that have changed, one example of that is my finger nails, all my life I have had dents, or ridges in them.  I'm told that is a sign of poisoning.  I no longer have that.  Crazy, huh???

My oldest daughter (25) went in to get tested after finding out I had CD.  She had developed some of the same symptoms I had at her age. She tested negative for the blood test but was encouraged to go on the diet anyway for 2 months.  She did and now has no doubt she has CD too.  I've heard the blood test is not very reliable.   The thing is, years ago, I went on a very low fat diet for several months, since purging myself of high fatty foods, I have never been able to go back to them without having it effect me.  My body just can't seem to process them now.   I was wondering if it's possible to do that with gluten.  I got/get sick every time I have anything with gluten in it. I know within 10 min's of ingesting it.  My daughter didn't get sick to her stomach I way I do, before going on the gf diet.  However, since purging herself the past couple months, now if she gets any gluten she gets sick the same as I do.  It makes sense to me that she does have CD but in the back of my mind I keep wondering maybe she really doesn't, that its just because she cleaned it out of her system and now she can't tolerate it.  Is that possible???  Could someone without CD be effected that way?

MJ

[the sensible celiac]

Hi MJ, I'm glad you found us.

It is very common for people with CD to become hyper-sensitive to gluten after going GF for a while.  The way that you describe what happens with you and your daughter having pronounced reactions seems perfectly consistent with CD, at least to me.  I have no medical training, I'm basing on this on anecdotal reports I have heard over the years from other celiacs.

I had this experience and so did my daughter.   I have been gluten-free over 10 years now, and more recently i wonder if I still do react dramatically that way, because I have not had such an episode in years.  OTOH, I am almost always home so there are few opportunities for me to be exposed to gluten.  As I am also vegan, dining out is a real experience for me.

I have read Dangerous Grains, and much of what he says is good and useful, but I think grains are not really so bad for people who do not have CD or food allergies.

The blood antigen tests often produce false negatives, a biopsy of small intestine tissue via endoscopy is still the gold standard, but if your daughter has been GF for 2 months chances are that her villi are at least partially regrown, so a biopsy would likely find no damage.  Since I'm not aware of any other hereditary condition that involves wheat, it seems very logical to proceed on the basis that she has it too.

[jaysmommy]

I did post separately in this forum, but in reading everyone's stories and just being  at really all the different symptoms out there I wanted to specifically answer the questions. It is my son that is on a GF diet.

Have you been diagnosed?
We are in the process of getting Jay diagnosed. All tests have been negative so far. The one endoscopy that he had came back with some cells that we abnormal but not enough to officially diagnose Celiac. We go back to our GI in August and if he continues to improve as he has then he may do another biopsy to see if there is change. He may also put him back on gluten for a trial run to see what that does, which would be followed by a third biopsy.

Did you suffer a long time before your diagnosis?
Jay never really acted like he had pain in his belly or elsewhere, he has never had "normal" stools except before he started table food.

What symptoms did you have?
His stools have varied, but they are mostly diarrhea. It started with a blood test at his nine month checkup coming back anemic, so he was placed on an iron supplement with no change. At a year he was still anemic, so our ped had his stool tested and results stated that he had blood in his stool. She referred him to a GI in July of 2007, University of Michigan stated that the first opening they had was in October. After I called our ped she called and the next thing I knew I was called to be told that our appointment was that day (July 31st) with the head of Peds Gastroenterology. We went in and that following Monday, August 6th, Jay was having the EGD and the biopsy.

From there he was allergy tested which came back negative. Then he started losing weight....went from the 50th percentile that he had always been at down to the 15th. His belly started getting bigger.....and the GI was concerned that he may become malnourished, so he sent him for an Upper GI to see if there was a narrowing of the intestines that was preventing the absorption of nutrients. It was when that came back negative that he decided we should try the GF diet to see what would happen. We started that in January 2008.

In April 2008 he was back to the weight he was in October. Not as much as the GI would have liked to see but it was an improvement. And, I can say that he has normal stools now. And like so many of you here, I can tell if he ingests something with gluten in it. We have not experimented with oats, but would like to, as he really loves oatmeal.....I am kind of hesitant to try though. He does tolerate Fruity Pebbles, even though they are not labeled as GF like Rice Chex now is.

What methods were used to test? Blood tests? Endoscopy?
Jay has had blood tests, endoscopy, skin prick allergy testing and an Upper GI.

In reading much more about Celiac, I am pretty convinced that he does have it and it is not just a sensitivity that he may outgrow. We do have a history of Chron's and IBS in the family (my mother, two of my sister's). My mother is also anemic...has had that for years. My niece has some major excema that is usually all over her butt and thighs....I am wondering if it is Dermatitis Herpitiformis........I know the dermatologist that my sister took her too asked if there was anyone in the family that had Celiac......but I have no idea if that referral was followed through on. Time to get on my sister to be sure that my niece is tested, that's for sure.

I am so glad that I came across this site. I have actually found the diet a little easier than expected. But we don't have to avoid dairy or eggs so that helps.   It is funny to see some of my family just automatically switch like they have been feeding him GF since he was born, and then others (like my Mother in Law) get that panicky look when she is asked to babysit and she realizes that she will have to feed him a meal....

[megaserve]

I'll second the peanut butter advice!  I buy GF frozen waffles at Trader Joes and toast them, then spread some peanut butter on it.  I love it when the melting peanut buter soaks into the little rectangles in the waffle.

*grumble* thanks for making me hungry this morning! I think I'm going to go make some of these right now to enjoy with my coffee

----
Josh
Gluten Free since 2003