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

[vintage52]

I am self diagnosed.  My story goes like this:  I suffered a herniated disc in my neck in 2000 which was extremely painful and life altering.  I'm an RN and had to take a year off work while it healed, thankfully without surgery.  During that year of healing I began to have terrible indigestion, bloating and diarrhea.  Nothing much at first, but it got progressively worse.  The bouts seemed intermittent at first.  Food poisoning?  Flu?  Stress?  I tried all sorts of over the counter remedies which, of course, didn't help much.  Then the bouts began to come more frequently.   Then, in May 2001, we took a trip to Monterey.  First night there we had pizza and I got terribly sick.   When I felt better we went to the pier and  feasted on clam chowder served in a sourdough bowl - a Monterey tradition.   Of course I got horribly sick again and the drive back home was utterly miserable.   After several days of nothing but clear fluids I thought I could handle some bland food again and ate (here's the kicker)  soda crackers!!   That's when the lightbulb over my head went on.  Not food poisoning, not flu, not stress . . . wheat!   Even though I'm an RN, I knew nothing about celiac disease.  Went to see my MD who listened to my story, nodded his head, and said "yep -  you have sprue".  He didn't feel that any tests or further work-up was needed - just cautioned me that the only remedy was to stay entirely away from gluten forever.   That's exactly what I have tried to do and my life is relatively normal now.  I am extremely careful, read labels religiously, but even so I still get tripped up occasionally.   I just recently discovered this website and am so grateful for the exchange of information, ideas and support!   I plan on being a frequent visitor!   

[chezchar]

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...I dont know if i have celiac but i have symptoms that make me think i have something like it.  i do not tolerate grains.  they make me extremely constipated.  i break out in bumps on my chest and back of arms when i eat grains.  i stay off of them most of the time.  i have a hard time with constipation.  i cut out dairy foods also to see if that helped.  sometimes it does but the constipation is still there.  i take lots of acidophilous i feel it helps.  i would like to find a fiber supplement to take.  my tongue is coated and i have tried everything to fix it.  i did a yeast cleanse.  i have done enzymes and cant seem to find anything that helps.  can someone give me a suggestion?
chezchar

Steve

[Sharon]

I was just diagnosed Aug 2004.  The symptoms weren't really typical until the very end.  But for 2 1/2 years I had increasing hip/leg pain that finally got so bad that I couldn't stand for more than about 5 minutes two times a day.  When it finally started bothering me even when sitting I agreed to an MRI.  The MRI showed severe spinal stenosis (complicated by scoliosis) which the orthopedist said could only be repaired at great risk, with bone grafts and such when I was somewhat older and finally said I couldn't stand the pain anymore.  I acquired a wheelchair for extended outings and got a handicap parking permit so I could access stores at least briefly.  My husband and I started talking about how long I might realistically be able to work and how we might remodel our home for handicap accessibility.

About a month later I thought I had the flu with severe fatigue, the chills and nausea.  These symptoms continued for two weeks at which time my blood pressure plummetted and my heart rate spiked and I was hospitalized and treated for what they thought was a heart attack.  My heart proved to be fine and I was discharged feeling as bad as when I went in.

I went to my own doctor in a community different from the hospital, who thought I probably had a virus, but ordered an endoscopy anyway.  The resulting biopsy showed possible celiac, though a blood test was negative, and so I started a trial gluten free diet (fortunately with the daily coaching of a friend with the diagnosis). 

Within three days my nausea and fatigue were significantly improved, but to the total surprise of me and my Dr., by the sixth day I could walk again.  On day 7 I returned the wheelchair and yanked the handicap parking sticker out of my car.  It also turns out that my high blood pressure, episodes of severe insomnia and migraine headaches, all which started about 8 years ago, have also disappeared, except they return ferociously if I ingest gluten and now also dairy.

I can literally do gluten free for life. I have mine back again.

[the sensible celiac]

Chezchar wrote:

I dont know if i have celiac but i have symptoms that make me think i have something like it. i do not tolerate grains. they make me extremely constipated. i break out in bumps on my chest and back of arms when i eat grains. i stay off of them most of the time. i have a hard time with constipation. i cut out dairy foods also to see if that helped. sometimes it does but the constipation is still there. i take lots of acidophilous i feel it helps. i would like to find a fiber supplement to take. my tongue is coated and i have tried everything to fix it. i did a yeast cleanse. i have done enzymes and cant seem to find anything that helps. can someone give me a suggestion?
chezchar

My suggestion is that you should be tested for celiac disease. Although everyone associates diarrhea with this condition, constipation is another common symptom.  The bumps that you describe could very well be Dermatitis Herpetiformis. Look at this web page that discusses Dermatitis Herpetiformis:
http://www.nlm.nih.gov/medlineplus/ency/article/001480.htm

If you are going to see your doctor to try to get a diagnosis, do not go on a GF diet first, keep eating as you have been. Although celiac disease is a major inconvenience, you can usuallly get all of the symptoms to go away just by sticking to a gluten free diet.  Many people, muyself included, find that they suddenly feel much better

[copperowl]

Around 1996, I came down with what I thought was a nasty case of food poisoning, with all the lovely abdominal symptoms. I got better, but it just wouldn't go away.  I had lost 40 pounds and my doctor ran lots of tests, all of which came out negative (he didn't check for celiac). Finally I was told that it was Irritable Bowel Syndrome, probably caused by stress, and I would have to live with it. I spent a lot of time eating the BRAT diet (bananas, white rice, applesauce, dry toast), which is a standard treatment for intestinal problems. Sometimes it worked, sometimes not. In hindsight, it was probably OK as long as I didn't have toast.

Life went on for about 5 years, and then I turned 50. My doctor got out the clipboard and started checking off the "50,000-mile checkups", which included a baseline colonoscopy. I checked the box for chronic diarrhea on the intake form at the gastroenterologist's office, and when queried about it, said what I had been told. To her credit, she told me, "No, it's not normal. Let's find out why."

She ran all the same tests--again, all negative. I kept saying that it was just the way I was; my Dad, brother and nephew all had the same trouble, so it wasn't unusual. She asked what ethnic heritage I had (Northern European), and said, "Hmm. Let me run one more test. There's something that tends to run in that ethnic group, and since your family seems to have the same problem..."

The blood tests came back positive for celiac. I chose not to have the biopsy for personal reasons, opting to go on the diet and see if it helped. Within 48 hours, I had the first "normal" bathroom experience in over 5 years. I am fine as long as I strictly eliminate gluten, and I usually know within hours if I've accidently injested any.

In hindsight, there was one other clue which everyone missed. I tried to donate blood and was told that my iron levels were a little lower than they allow. The Blood Mobile guys asked me if I was a vegetarian (no) and said I probably needed to eat more meat. They said it was nothing to worry about, but I might want to mention it to my doctor the next time I saw him. I have never before nor since had an iron problem.

And what about my family? I am certain that my Dad had celiac, but he passed away many years ago. My brother refuses to take the test, saying he just couldn't give up bread. He would rather not know. He also refuses to have his son tested, for which I am very sad, but I have no control over it. When the boy is old enough, maybe I'll talk directly to him. In the meantime, I hope that his problems are not celiac, or if they are, that the boy's doctor will get a clue and test him.

Oh--I gained back all the weight I'd lost, and a little more. I wouldn't mind being a little slimmer, but not via the way it happened before.

[retta03]

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?yes I suffered for almost a year

What symptoms did you have?I thought I was having a gullbladder attack or my appendix was infected.

What methods were used to test? Blood tests? Endoscopy?they did afew different test before they did the endoscopy

Let's share our stories here...EVERY TIME I ATE ANYTHING IT SEEMED LIKE I WAS GOING TO EXPLODE THE CRAMPING WAS WORSE THAN ANYTHING.I WENT TO THE ER 3 TIMES AND ALL 3 THEY SENT ME HOME THEY SAID IT WAS JUST GAS.THYEY FINALLY SENT ME TO A DOCTOR WHO I HAVE GROWN TO TRUST THAT DID THE RIGHT TEST AND FOUND OUT THAT I HAD THIS WHAT I CALL HORRIBLE DISEASE.I AM TRYING VERY HARD TO CHANGE MY LIFE STYLE BUT IT HAS BEEN VERY DIFFICULT TO DO.


Steve

[bambam]

Hello, I am new to this site, and am reading up on everything.

Regarding my diagnosis.  I diagnosed myself because of limited insurance and other reasons.  I battled with constipation, diarrhea, stomach problems for about twelve years.  A good friend says "stop eating wheat." And it was like a miracle happened.  The only thing was I didn't investigate or learn about what was wrong with me,  I didn't know about "Celiac" until one day I found Celiac.com, which I am a member of.  I learned that there is wheat.gluten in everything, and so last August 6th, I gave up all gluten in what I was eating, and that made even a bigger difference.  I was still eating Rice Chex and not paying attention to all the preservatives. 

So anyway, I am self diagnosed, and have no intention of getting tests done.  Some people tell me that since I was not diagnosed by a doctor that I am all wrong.  I know my body, and when I put certain things in it, I do not feel well, and those things are wheat, barley, rye and oats and some dairy.  Doctors told me I had IBS and I would just have to live with it.  I couldn't travel, it was hard for me to go to work and nobody wanted to test me for any other problems. 

So anyway, that is a short story of my diagnosis.  I am feeling close to 100% better,  I still have anxieties about bathroom issues, I think I know where every bathroom is in the State that I travel!!  Most of my friends and family know and understand, but then there are the ones that say, "oh just pick around the noodles and you'll find something to eat.

I look forward to finding lots of info here.  I have already made several recipes from the Tuesday night dinners section.  The wild rice stuffing is AWESOME!!

BamBam

[tksmom]

I have tested negative for Celiac. But I feel better being on the GF diet though. 

I can tell when my daughter has eaten gluten somehow, she gets moody, whiney and headaches. 

I say, if it helps and you feel better than why not?

Also, if you like Rice Chex, try a cereal from Health Valley called Rice Crunch'Ems.  These taste so much like Rice Chex it's scary.  The only store I can find them at is Whole Foods Market and they don't cost more than regular cereal for a big box.  When I go I stock up for my daughter and I.

If you can't find them you can also order them from here:

http://www.allergygrocer.com/

[bambam]

Yes, I found Rice Chrunch ems at the health food store near by - it's not a whole foods, and I'm gonna save the box next time and take it to my health food store and ask if he can get them here.  That is what I do, when I find something good, I take it to my health food store or my grocery store and ask if they can get it in.  Sometimes they can and sometimes they can't.  With the price of gas it is not worth the money to drive 280 miles round trip for a few things from the health food store!

bambam

[steadyed]

My story is a bit different from the rest......I started losing weight at nine months, right after I was weaned.  After several months of no weight gain and stunted growth,  my parents took me to our pediatrician, who just happenned to hear of celiac, though did not know much about it.  since the choices in diagnoses were between this and something much more deadly, he suggested trying this first, hoping it wasn't anything worse.

It happenned to work.  I grew six inches and gained about ten pounds in the next few months.  An aunt who was a dietician helped research a diet for me to start with, though it was a variation of the so-called "banana diet".  (This was over 45 years ago!)

Of course, there were problems due to misconceptions about celiac, the main one being that it could be outgrown.  I complained so much about bread thaty my mother gave up packing sandwiches in my lunch, and I ended up eating in glutens fron other sources that I remained terribly underweight for almost half my life.

I make a great effort to keep GF these days, including keeping a package of GF bread mix around, though I can't say I am always successful.  After I read everyone's stories mine seems so unusual as celiac was noticable within the first year of my life, and was sucessfully diagnosed so early.

[the sensible celiac]

Hi Steadyed, and welcome

I hope you'll redouble your efforts to keep to a GF diet.  You seem fairly knowledgable about the condition, so I assume you know that repeated exposure to gluten does raise the odds that you'll have other health problems as a result.

I'm curious what types of bread mix you have tried, and what your reaction was to them.

I have not really tried too many of the available mixes, but the Homemade Wonderful GF Bread Mix from Bob's Red Mill is the best I've had to date.  It has a distinctly beany flavor, but I like beans.

Steve

[Solon]

Hi Steve, thanks for a nice forum.

Have you been diagnosed? I have not been officially diagnosed with celiac disease. Started on a gluten diet in my eagerness to live a more fulfilling and healthy life after years and years with chronic diseases.
The gluten free diet was tried after I saw some pictures of some blisters (Dermatitis Herpetiformis) that resembled the ones I had. 6 months have passed since I got GF, with fatigue and tiredness, before I got better. An exhausting period with tremendous positive health changes. Because the diet change caused such an energy drain it is out of the question to go back on a gluten diet only to get an official diagnosis.  What should I do that for?
I am convinced about the diagnosis, even if I do not believe it classical celiac disease.

About the exhaustion and tiredness: I felt like a drug or alcohol addict with withdrawal symptoms even though I only got off gluten. At times it was impossible to complete a chain of thoughts. Have never experienced that before: Now this exhaustion is gone and alertness and activity level is soon normal again.

Have any of you experienced something like this when going gluten free?   Is it a rebound effect, withdrawal effect (http://homepage.mac.com/sholland/celiac/wheatopiates.html) or related to the healing/regeneration of the body tissues?

Please tell me if some of you know anything about it.

Did you suffer a long time before your diagnosis? Yes a lot of suffering, since I was a child, but am self-diagnosed after 6 months on gluten free diet. The diet have made miracles happen.

What symptoms did you have? I have had severe asthma with frequent hospitalizations, allergies particularly to petrochemicals as for instance perfumes and also cigarette smoke. Skin rashes with burning sensations and itchy blisters (DH) particularly on my hands and also a few areas with eczema. No particular allergens where detected in spite of the obvious symptoms and many allergy tests.
I react with itching and small red spots after exposure to sunlight. Since I was a child there was some white bumps (either fat globules or dermal fungus infection) behind the lower lip, but they disappeared 5 months after I went GF. I have also been iron deficient since child years.

Twice I have been hospitalized for observation and testing with severe pain in the stomach area, but tests for celiac disease was never undertaken. Constipation (nearly every day), lactose intolerance, bad regulation of blood sugar is part of the symptoms experienced. Some years ago I was also hospitalized twice with severe asthma attacks after eating spaghetti in minced meat sauce.

Psychological symptoms have been frequent irritations, some depressive periods over the years and in periods an inability to concentrate. I do not have ADHD. In periods also as a child I have had experiences of exhaustion.

Other clues for celiac disease have been my food preferences. Without ever suspecting celiac disease I’ve learned to stay away from malt extract, soy sauce, hot dogs (the only type I could eat was real wiener sausages), dinner sauces, milk and cream cakes. It is easy to understand why oat porridge, rice cakes and corn flakes were preferred before bread.

regards from Solon

[Solon]

i do not tolerate grains.  they make me extremely constipated.  i break out in bumps on my chest and back of arms when i eat grains.  i stay off of them most of the time.  i have a hard time with constipation.  i cut out dairy foods also to see if that helped.  sometimes it does but the constipation is still there.  i take lots of acidophilous i feel it helps.  i would like to find a fiber supplement to take.  my tongue is coated and i have tried everything to fix it.  i did a yeast cleanse.  i have done enzymes and cant seem to find anything that helps.  can someone give me a suggestion? chezchar

Chezhar read this link, it works for me when I use 125 cc (30 mg magnesium chloride hexahydrate dissolved in 1 liter with water) orally 2 times a day and the next day 3 times, then 2 times the day after that.. etc. Not to be used if you have renal diseases, but is a safe salt. Magnesium comes in tablet form too. Check it up, read carefully. Ask a MD or an alternative health practitioner.

http://www.curezone.com/art/read.asp?ID=49&db=5&C0=74

My constipation problems have become very much better on a gluten free diet, but I still use magnesium until I am healed. I have to be patient it seems. Still have some tiredness, general itching and some constipation and bloating. But..... then I ate white cheese and buckwheat, may be it is time to let that go.

There is a herb called horsetail http://www.kroger.com/hn/Herb/Horsetail.htm
This herb helps to reduce yeast (candida albicans) problems. You boil up 7 full tablespoons with 0.7 liter water, and then keep it on the lowest heat for about 30 minutes (not boiling). Drink it hot or cold and can be kept for 24 hours. Go google on the cautions/precautions and contra indications. You should not use this for very long periods and in very large quantum’s a day (0.7 liters works well for me) and if you suffer from some conditions ( I do not remember which). It is important to make sure what the side effects are. Again… Check it up. Ask a MD or an alternative health practitioner.

Both magnesium and horsetail is inexpensive ways to treat symptoms, and if you read the link on the magnesium it says that it can be a cure of chronic diseases as well.
Good luck from Solon

[esnyder105]

I was diagnosed on May 12, 2005 after a blood test reading of 179 for Anti-Tissue Transglutaminase.

How does this number compare with others who are newly dx?

[Joanne]

My husband was recently confirmed as having CD.  His diagnosis was accidental.  He had trouble swallowing foods and required a drink to "push" the foods down his esophogus.  He went to a GP and was referred to a GI.  The GI believed that he had Schatzke's ring and ordered a scope.  It was determined during the scope that he also had scalloping of the duodenum and a biopsy was taken.  The results of the biopsy also pointed to CD and blood tests were ordered.  The results of the blood test were mixed as he didn't have the Anti-tissue transglutaminase Antibody levels to indicate CD but did have elevated Anti-gliadin antibodies.   He didn't have excessive symptoms that would have made him seek treatment as most people with CD do so he would have gone for years before it may have become chronic.

Joanne - wife of Gregor