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

[the sensible celiac]

Use this space to discuss the process of detecting and diagnosing Celiac disease.

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

What symptoms did you have?

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

Let's share our stories here...

Steve

[Linda Lane]

Have you been diagnosed?

I had once  a month sinucitis. My doctor thought it was probably food allergies and I had been tested for quite a few things that looked ok. When I started vomiting and not digesting foods, to stop that, I began eliminating gluten type foods from my diet. Doing that let me get healthy.

 Did you suffer a long time before your diagnosis? Yes. I never connnected the symptoms I had to food. When my younger son recently began vomiting as I had, he went on my diet and was ok in a day. It took me several days at the point I was at to get clear of just the vomiting part. The sinus part took over 3 weeks to fully clear. I just thought it was usual to be sick when others around me were not. My mom still has not gone gluten free and lives with the symptoms of it all. My family usually dies terribly young; I have the hope I might be the first exception.

What symptoms did you have? Sinus and ear aches (nausea, vomiting on waking). Not digesting food (vomiting the item or it went through whole pieces via diahrrea). swelling of limbs and abdomal. (exhaustion, harder to process things mentally, fitting of clothes, rings always changed in how they fit). cravings-food addiction.  Moods (depressed or insecurity), nervousness, impatience. Abdominal pain as food protested going through was as bad as transition labor was. (PMS was nothing comparitively.) When I connected how sugar without fiber affected me in terms of so much pain, I was staggered. 

What methods were used to test? Blood tests? Endoscopy? My doctors did not know about these methods when i was looking for answers. I had such a large difference when I removed foods from my diet, it seemed pretty clear what was going on. Also, when I have since been given an incorrect item, the return to symptoms is so defiinitive, I am sadly willing to stay GF.

It is tough staying GF. Trying to keep on my lifestyle with a married partner who does not have gluten problems was my hardest area. My husbands family loved going to restaurants and I have gotten to the point where I say no (having had to pull back from those restaurants). currently, I have developed other allergies and have to be beef, chicken and turkey free, as well. I currently eat lamb, ok. I also was ok with rice and now have developed problems with it, which is really sad. I can eat corn and potato. I also seem to be ok with whole rolled oats. I cannot use any kind of viniager which is really inconvenient but lemons seem to be ok. I have to avoid cow milk and other milk products of all kind but for now, seem to be ok with goat milk and goat cheese. I have to avoid soy in every description and went into anaphalactic shock from a soy derved medicine. Surprisingly, our diet is more tasty and fresh and fun than I had ever anticipated it could be and our gluten ok people find dipping into our foods a fun change.

[JUDI42MIL]

I have suffered my whole life with stomach problems, constipation, vomiting daily. In and out of the doctors office and hospitals trying to figure out what was wrong with my stomach. Spent most of my life being told I was anerexic or bulemic.
Then one day at the doctor about 9 months ago, there of course for my stomach, I said to him you know my mom has something called celiac . He about died, he was so upset he hadnt asked me about that or tested for it years ago. Any way he did the blood work and yep I had it.So I went on the diet that day. What a hard diet too as yall know. Im vegan on top of it too so foods are so limiting. I really wish there were more fast foods. You know the kind you open a cabinet and just grab something. Also Im a pain to go out to eat with.

[the sensible celiac]

Yes, I'm vegan and celiac too. I dread going out for a restaurant meal with a group of people. Lucky for me that I've been able to arrange to work from home indefinitely, but once in a while I take the 500 mile trip to my employer's location in the Bay area.

My co-workers and manager are very understanding about my limited diet. They usually let me choose where we will go to eat.

As far as fast food goes, I here ya. There is a brand of British GF foods called Barkat. Among other things they make some pot meals of the type where you pour in hot water and let it sit.  I especially like their mexican rice thing, although it feels odd to be living in Southern California and be buying Mexican style food from the UK. 

Mexican food is often a viable option for a vegan celiac. I sometimes get a side order of rice and a side order of beans, with a little frsh salsa it approaches a well balanced meal.  Veggie tacos (corn shell!) are another option sometimes, although you might need to ask them to hold the cheese-like fast food product.

I hope your awful gut experiences start getting lots better, real soon.

Steve

[GlutenfreeWarrior]

To make a long story short, I have suffered with symptoms of Celiac for four years that I know of.  But long before then I simply always felt bad.  I often commented to my wife I didn't feel good, but never connected my problems to food.  Anyway, my doctor finally found I was not absorbing iron and other nutrients.  Tests showed I was not losing blood, so he considered Celiac.  He did the Celiac Blood Panel on me and I tested positive for the disease.  He then referred me to a specialist.  The specialist took one look at me and said I was to healthy and muscular to have Celiac.  He refused to do the biopsy and tested me instead for irritable bowel syndrome.  When I came back negative for that he sent me back to my doctor telling him nothing was wrong with me.  My doctor ran another blood test and confirmed Celiac.  Since the specialist would not do anything, my doctor put me on a gluten free diet and then had me take a gluten challenge.  I got much better gluten free and then the gluten challenge made me very ill.  Because I get all my care through the V.A. I do not have any way to go to another specialist to get the biopsy.  But my primary care doctor is convinced, from the blood tests and being gluten free I have Celiac.  We are now waiting to see if I start absorbing iron again once my intestine has had a chance to heal.

Several times I have accidentally ingested hidden gluten and each time I got sick.
Bad migraine type headache, watery stool, nausea, the works.  But I was surprised that the V.A. specialist refused to do the biopsy even though my blood work showed I was Celiac.  That amazed me.

 

[CarolM]

Glutenfreewarrior,

Unfortunately, your story is more typical than atypical, from what I hear.  Celiac Disease is often mistaken for other ailments in the U.S., and many medical professionals are woefully under-educated about its symptoms, diagnosis and treatment.

You have also touched on another frustrating issue of CD:  not all sufferers present in the same manner.  Some, like you, appear outwardly healthy.  I suffered for many years before my condition finally worsened enough to get my doctor's attention.  I was so anemic and in such overall poor health, she initially suspected I had cancer.  It was another two years and two additional specialists before I was properly diagnosed (from an endoscopy).  It was actually the second endoscopy I'd had.  The first one had produced the same results, but just like your VA doctor, my gastroenterologist dismissed those findings and attributed the flattened villi to something else.  (Also, they just love to diagnose IBS, don't they??)  When I discovered that I could have achieved relief nine months earlier.....    Well, let's just say that guy is lucky he was talking to me on the phone and not in person, because I quickly developed hostile intentions.  Bravo to your PCP for standing by his diagnosis of CD.

I have now been GF for three years and it's made an incredible improvement in my quality of life.  Now I don't have to suffer debilitating cramps after every meal, and all the other symptoms we all know so well.

By the way, although the doctors tried to correct my severe anemia with high-dose iron therapy, no signifigant improvement was seen until I was on a GF diet and my intestines began to heal.  Good luck with your diet and fire away with any questions you have - we can all learn from each other.  As you've seen, doctors are not always the best informed about CD.  Mine admitted to me that within three weeks, I would know more about the disease than he did, and he was right.

CarolM

[the sensible celiac]

There are drugs that can be prescribed to treat IBS, I have no idea if they are of any use or not, but some drug company somewhere is making money when people buy them.

A doctor is an MD. MD stands for Doctor of Medicine. Medicines are drugs.

I sometimes wonder if some doctors fail to consider or diagnose celiac disease because there are no drugs of any use in treating it.

I've often thought that, if there were a drug for celiac disease, we'd all be seeing helpful commercials on TV about Today's Fuschia Pill, complete with people climbing around on odd shaped rocks with big smiles on their faces.

Whatever the reason may be, it is undeniably true that celiac disease is under-diagnosed in this country.

I've heard that in Italy, young schoolchildren are routinely screened for celiac disease by way of blood antigen tests.

[GlutenfreeWarrior]

Glutenfreewarrior,

Unfortunately, your story is more typical than atypical, from what I hear.  Celiac Disease is often mistaken for other ailments in the U.S., and many medical professionals are woefully under-educated about its symptoms, diagnosis and treatment.

Hi Carol M.

I do have a question for you.  I have noticed I got severe asthma about the same time as we have determined I would have begun having Celiac.  On very bad days of Celiac I have now determined my asthma would be much worse.  Did you have other conditions that have now improved for you on a gluten free diet? 

As to applauding my primary care doctor, I am.  I can tell you if he hadn't stood by his diagnosis, and if I hadn't had the positive blood tests, my wife and I would just figure I was crazy and go for psychotherapy.  Oddly, despite my excellent physical condition, I am a bodybuilder, I have failed to develop and progress as I should have given how hard I work out and how well I eat.  When I found out I was not properly absorbing nutrients it all made complete sense.  I was doing the work, but my muscles could not repair and grow due to the malabsorption of nutrients.   So, while I am very healthy and muscular, I should be even more so.  My bet is that as my villi heal and begin absorbing nutrients I will finally make more progress.

Thanks for your feedback.

[GlutenfreeWarrior]

I've often thought that, if there were a drug for celiac disease, we'd all be seeing helpful commercials on TV about Today's Fuschia Pill, complete with people climbing around on odd shaped rocks with big smiles on their faces.

Hi Srider,

You can bet on it.  I think it is critical for Celiac's to see everyone suffering from Celiac to be diagnosed with it.  When the numbers get high enough you'd see the drug companies falling all over each other to get the first drug on the market to help us. 

[zarfstertugboat]

  s ince 1988 when I first had noticeable signs that couldn't be ignored; a huge fart every minute or so, that went on and on with no end, is just one example, weakness,boderline anemia,loose stools that floated and had an unpleasant odor,bone pain, belly aches, and a bunch more. Beano didn't work at all.  The farting finally drove me to seek help from a gastroenteroligist. What a jerk this clown turned out to be. Charges were brought against him for working a scam on social security(overbilling) and the hospital he worked out of kicked him out.....When I visited him, I asked for a CBC and to be checked for allergies, this was done and I left the office and returned a week or so later for the results, He dissmised me and said everything was OK, upon leaving the office, just as I got to the door to exit, he says. oh, by the way, your allergic to wheat gluten. This took a while to sink in, as I had never heard of wheat gluten. Later I finally figured out what he had done.........By giving me minimum news as I was exiting, he saved the time that he would normally have used explaining what wheat gluten allergy was all aboat and what I needed to do ...Hey, time is money!  So no, I havn't been dx..........I've gone thru approx. 46 drs since the first signs and not one of these drs. brought up the word celiac............  What happened?...I bought my first computer and after a few months of getting used to it. I entered the words  WHEAT GLUTEN in google and that was the begining of this crazy oddessey................I read somewhere, i think it was on www.celiac.com .  about the three day gf diet and I tried it.  After three days of no gluten I felt much better and that was my answer.  I feel much better now  no thanks to the md.s  Do I need to get dx,...........NO ......Am I going to get dx'd,  no way.....There may be some dr.s in honolulu that are capable of dx'ing cd, but I don't know who they are and I don't feel the need . I'm 75 and don't have time for them to learn at my expense.............zarfstertugboat................honolulu

[cpedrick]

I really wish there were more fast foods. You know the kind you open a cabinet and just grab something. Also Im a pain to go out to eat with.

[/color]
  As a type II Diabetic I can give you a few "fast" food ideas.  Really, really fast is organic peanut butter.  Just grab a spoonfull.  It didn't occur to me to buy it once I had to give up bread, but now it does wonders for me.
  Secondly, keep cans of vegetables and beans on hand.  Fresh or frozen is better, but we're talking speed here.
  Third, keep cooked rice or quinoa on hand in the refrigerator.
  Forth, if you are not a vegan, keep cans of fish, chicken, etc. on hand.
  As I tend to get too focused on whatever I am doing and neglect to eat, there have been many times when opening a can of vegetables, a tin of fish (Kipper Snacks, YUM!), and tossing it all with some rice has saved me.
  Sometimes I just eat the cold canned vegetables by themselves in a real pinch.

[the sensible celiac]

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.

Because peanut butter has a fairly high amount of both fat and protein, I do not get hungry again before lunchtime if I've had peanut butter waffles for breakfast.

Usually I'll have some fresh fruit, or canned mandarin oranges, with the waffles.

[mcdesign]

After suffering for 6 1/2 yrs with CIDP (chronic inflammatory demyelating polyneuropathy), I started having stomach pain all day, everyday.  After seeing a gastroenterologist, having a CAT scan and finally being scoped there seemed to be no answer.  I was sick and tired of living on pain killers, etc.  I started to see a reflexologist who told me in no uncertain terms that I was allergic to wheat.  Not believing her, I tested myself.  Completely went off all wheat products for 4 days and resumed on day 5.  Amazingly enough the pain in my stomach went away, but came back 2 1/2 hrs after resuming wheat.  I stayed off for 5 months, went back to the neurologist who redid many tests and most of the feeling in my arms, hands, legs and feet had returned.  He remarked that even though he tested me for CD twice he was convinced that I was one of the 20% who tests negative.  I then began a gluten free diet. Soon after I detoxed from all narcotics and have been virtually pain free for 2 yrs.

[tksmom]

My 13 yr. old daughter has been recently diagnosed with Celiac.  She did not have the typical symptoms like diarrhea, weight loss, failure to thrive, etc. 

Her symptoms included fatigue, constant stomach pain, constipation, rectal bleeding, moodiness, headaches, dizziness and the worst was the bone and joint pain(She dances, so we attributed the pain to that).  One morning she woke up and could not walk because it was so painful, but the Rheumatologist could find nothing wrong.  They said it was a strep infection that got into her joints.

When she was 8 months old, she almost died due to bleeding ulcers that burned a hole through the aorta in her stomach.  When she started having rectal bleeding last year her pediatrician sent her back to the GI doctor, who thought it was just due to constipation.  Fortunately, she routinely does a whole battery of blood test including those for Celiac Disease. 

When those came back acutely positive we were all shocked. Then they did the biopsy and that came back negative, her villi were completely normal.  The GI doctor was convinced it was Celiac though, so we decided to try the diet to see if her blood levels come down.

Within the first 3 months of starting the diet her levels were nearly back to normal.  She just had a second round of tests after 6 months on the diet and her levels are completely normal AND she is symptom free!!  From what I have read, it is rare for a doctor to diagnos Celiac without a positive biopsy, but as her doctor said, "How can I say she doesn't have Celiac?" 

This doctor helped save her life as a baby and as far as I'm concerned she has saved her again. 

She has taken all of this well.  She actually was relieved to know that her symptoms were not just all in her head.  Not to say that the diet isn't hard for her at times, she lived on bread, pasta and pizza.  But we are finding substitutes as we go along and learning slowly by our mistakes.  I have decided to do the diet along with her so she doesn't feel so alone with it and to see if some of my GI symptoms clear up(some have, some haven't).  I've had negative blood tests and biopsy myself.  My other children tested negative and my husband has not been tested yet. 

Anyway, thanks for this website, it's nice to know there are others out there that understand.  I hope to be able to share some things I have learned as well as learn new things myself.  If it weren't so late, I go to all the topics and make a post!

[omyspleen]

It is true that medical providers are not taught much about celiac disease in school!  I am a medical provider and for 8 years suffered with many symptoms and eventually lost my spleen before a friend of mine (who is a hematologist) did an internet search related to spleenic atrophy and hit on celiac disease!  I was misdiagnosed as having fibromyalgia, irritable bowel syndrome, depression, perimenopause, gallblader disease, and having  systemic candida ( as you can imagine my symptoms got better giving up yeast!).  Of course when my endomysial antibody came back positive I was so amazed.  I have been testing many of my patients now who I may have misdiagnosed out of my lack of understanding of the variation of presentation.  Boy do I feel better now being on the GF diet and just had another biopsy to see if I am healing!