How Much You Wanna Bet....

[EvilGut]

...that I have celiac disease? Not your classic childhood onset celiac disease, but celiac disease nonetheless.

Here's the rundown on me:

Sex: Female

Symptoms: history of severe irritable bowel syndrome since age 12; fatigue and listlessness.

Abnormal blood tests: anemia (unexplained and chronic); lymphopenia (low lymphocyte count--no history of HIV); autoantibody to Sjogren's syndrome. Immunoglobulin deficiency (IgE and possibly IgA). Low blood calcium levels.

Associated Diseases: Autoimmune thyroid disease; mild Sjogren's Syndrome.

I have yet to get the blood tests. Then again, if I have IgA deficiency, most of the autoantibody tests for celiac disease will be negative. IgG anti-gliadin might be positive but that's not as sensitive or specific.

Questions for adults with the disease:

1) On the gluten free diet, did you gain weight? Weight loss is definitely not a symptom of mine. In fact, I have the opposite problem.

2) How hellish is the gluten free diet? Consistent with 1), I live to eat.

Thanks in advance.

[jerseyangel]

First -- I love the name EvilGut! How perfect "considering". I laughed. Anyway, I gained about 10 pounds almost immediately after going gluten-free. I am a celiac who was never underweight--always a bit over (10-15lbs.) As far as the gluten-free diet, I've been on it (and dairy free) for 4+ mos. It's not bad at all--there are a lot of things you can have such as the same fruits, veggies and fresh meats that you're used to. There are some good gluten-free versions of breads, desserts etc. available at health food markets. There is alot of info. on these boards in the foods and recipes sections. Good luck to you, there is a lot of good info. to be had here--feel free to ask anything!

[frenchiemama]

It does sound likely with that medical history.

1) I didn't gain any weight. At first I lost about 15lbs, but over the last few months I have gotten back up to my initial weight (which is where I want to be).

2) Not hellish at all. Inconvenient at times, frustrating at times, but not hellish. Really it just takes a little getting used to. Of course there are times when I get upset because there is ONE thing that I want and I can't have it, but most of the time I'm happy with the things that I can have.

[EvilGut]

Wow, thanks for the quick replies.

The only reason I would go on a gluten free diet would be to reduce the risk of intestinal lymphoma. The anemia and fatigue are nuisances I can tolerate. But intestinal lymphoma--that one really scares me.

LOL, yes, Jersey, Evil Gut is good way to describe mine, although the IBS symptoms have improved considerably over the past 10-15 years. From age 12-early 30's, it was hell--pain for two weeks straight with lots of fluid in the gut (it actually gurgled when I pushed on it.) Nobody seemed to know why it was so bad. Back then, celiac disease always started in childhood, or so the medical geniuses thought. If anything, I was constipated as a baby, and not anemic. Hence, celiac disease was never considered as a diagnosis.

So, y'all think I better get those blood tests, huh? Did you all have the jejunal biopsy?

[Nevadan]

I have yet to get the blood tests. Then again, if I have IgA deficiency,  most of the autoantibody tests for celiac disease will be negative. IgG anti-gliadin might be positive but that's not as sensitive or specific.

<{POST_SNAPBACK}>

Regarding testing, in my opinion the gluten-free diet itself is a valid test. Try it and if you see improvement, then try some gluten again and see if your symptoms return. I did that and found that most of what I call my overt symptoms (gas,bloat,constipation) were gone in 48 hrs. I also have osteoporosis and mild anemia and hope those are improving on the gluten-free diet - I'll retest both after 6 months on the gluten-free diet (in Jan) to confirm. I'm a 60 yr old male.

Again, my opinion, but I think the blood tests and endoscopies are overated. You might want to read "Dangerous Grains" by Braly & Hoggan (~$10 @ amazon .com). It discribes how celiac disease(intestinal villi damage) is only the "tip of the gluten sensitive iceberg" and how the non-celiac disease gluten sensitivity is equally damaging to the body (and mind) yielding a lot of diseases you seem to already have. It's possible for the standard blood tests & endoscopies to completely miss the non-celiac disease gluten sensitivity.

Another alternative which I exercised is to be tested by Enterolab for their DNA analysis (they test for a wider range of gluten sensitive genes than just the primary celiac disease ones (DQ2&8) compared to other labs I know of). Your gene results will not confirm whether you have celiac disease or non-celiac disease gluten sensitivity or neither; however, it will show what you are suseptible to having. I have a double DQ1 which makes me very unlikely to ever develop celiac disease with villi damage; however the DQ1 makes me susceptible to gluten sensitivity with presentation more likely to include neurological problems; I have mild symptoms of peripheral neuropathy, so that seems consistent with the DNA test. BTW, the PN is already improving after going gluten-free.

I agree with the others that the gluten-free diet is not that difficult - of course your opinion will depend a lot on your present eating habits.

Hope this helps.

George

[julie5914]

I'd money on your having it if I had money. I gained weight and was distended when I was feeling my worst before diagnosis. I had gained about 10-15 pounds. It is slowly, slowly coming off on the gluten-free diet, and it doesn't help that I seem to keep messing up without knowing it.

I loved starting the diet because it meant starting to feel better. Friends and work mixed with going out to eat is by far the hardest. I would only go to places like Outback that have a gluten-free menu or otherwise make it rule for the next 6 months not to eat out at all. Easier said than done though. Lunch is the hardest. If I haven't prepared it the night before and I am running late in the morning, you can bet I am likely to get glutened by eating out, even I explain my heart out to the person taking my order.

[FaithInScienceToo]

I have read that food cravings and weight gain can be symptoms, and I saw a research article recently showing that out of the biopsy-confirmed Celiacs, that about 22% were overweight.

Now that I think of it...although I was a picky eater as a kid, due to tummy aches, I had food cravings and weight gain in my young 20's (I went from a healthy 135 to 154 pounds)....

...before the serious unexplained weight loss began around age 25 (@ 5'9", I went down to 120 pounds), and then it was IBS at age 28, and Fibromyalgia at age 31...and an ADD diagnosis around age 38...

I finally found out that "I am a Celiac" at age 47 1/2... Better late than never!

I am now 117 pounds, after losing weight again recently, post food posioning (undercooked fish)...I am working on putting muscles back on...I am now exploring the Net for info on amino acid supplementation and pancratic enzymes and their potential connection to my maze....

Anyway...

As you see, it is 'a maze' for most of us...we all have similar, yet very individual pathways... I hope that being here helps you get through your maze.

PLEASE add your blood tests to this thread when you get them back...I am going to e-mail it to myself and will be able to track your story that way -

Thanks for sharing!

Love,

Gina

[Guest BellyTimber]

1. I was seriously emaciated from age 5 to mid-20s or beyond. I only put on weight because I put on height. My folks were in some kind of trouble for supposedly not feeding me. At that time (early 1960s) celiac disease had only just been discovered and info on it hadn't trickled out to doctors yet - still hasn't really.

From my early 30s became overweight. Have remained at same weight since going gluten-free.

2. My main problem is the same as Julie's - when not having prepared food earlier to take to work.

[Carriefaith]

1) On the gluten free diet, did you gain weight? Weight loss is definitely not a symptom of mine. In fact, I have the opposite problem.

I lost weight before I was diagnosed, so I gained that weight back. I didn't gain any more than that though.

2) How hellish is the gluten free diet? Consistent with 1), I live to eat.

The diet was hard at first, but I don't mind it at all now. I can still have all the things I used, I just have to work harder to make them. I also love that this diet forces me to eat healthy.

[Claire]

Wow, thanks for the quick replies. 

The only reason I would go on a gluten free diet would be to reduce the risk of intestinal lymphoma. The anemia and fatigue are nuisances I can tolerate.  But intestinal lymphoma--that one really scares me. 

LOL, yes, Jersey, Evil Gut is good way to describe mine, although the IBS symptoms have improved considerably over the past 10-15 years. From age 12-early 30's, it was hell--pain for two weeks straight with lots of fluid in the gut (it actually gurgled when I pushed on it.)  Nobody seemed to know why it was so bad. Back then, celiac disease always started in childhood, or so the medical geniuses thought. If anything, I was constipated as a baby, and not anemic. Hence, celiac disease was never considered as a diagnosis.

So, y'all think I better get those blood tests, huh?  Did you all have the jejunal biopsy?

<{POST_SNAPBACK}>

I can give you another good reason. Cerebellar ataxia - a brain disorder effecting gait and balance - even swallowing and breathing eventually. This is one of the neurological side effects of gluten attacking neurons. Don't chance it. Claire

[EvilGut]

Cerebellar ataxia--egads! I hadn't heard about the connection between that and celiac disease.

Called today to schedule an appointment with my gastroenterologist. Unfortunately, the earliest appointment I can get is next month. In a way, that's fine. It gives me time to wallow in my denial--I need that luxury. Heaven forbid I should do anything quickly or on the spur of the moment. Not one spontaneous neuron in this brain!

The diet freaks me out, to be quite honest. When I say I live to eat, I actually wake up in the morning anticipating the gluten-laden treat I have for breakfast every day. What will I do without little chocolate doughnuts?! Ack! Ok, stop laughing. LOL, I'll survive.

The anemia is becoming more than just a nuisance. Lately, I've been feeling very tired, almost spaced out. Last Saturday I came to work after a full night's sleep and almost took a snooze at my desk.

Some people have mentioned that the anemia of celiac disease can get worse as one gets older. Is that true? It seems to be that way for me.

Thanks again to one and all for the great responses.

[FaithInScienceToo]

Chocolate donuts?...I haven't had one in about a year...

BUT...I ordered some recently, on-line! :-) GLUTEN-FREE! Glazed!

I hope they'll taste 'normal' ...I go to my PO box tomorrow ...and will taste one soon...

Actually, I probably eat less sugar now that I am gluten-free, and that's GOOD :-)

I will probably eat ONLY ONE donut and feeze the rest, to keep them for extra-special treat times, because I am now into reading a lot about enzymes, amino acids, etc, etc, and am going to try to do more for myself to improve my heath than only being gluten-free... because my health has been low for soooo long now, that I know I need to do more.

ANYWAY...don't worry...if you find out that you need to be gluten-free and going gluten-free makes you feel better, you won't want gluten again...

I don't at least...

BUT, I DID want to try a gluten-free donut, after reading about them on this board! ;-)

At least once.

Best wishes with the blood tests, and enjoy your possibly-last month of gluten-ingestion! Don't go overbaord, though... you're gonna still need some of your brain cells to decifer the tests, and deal with your doc ;-)

Gina

[cornbread]

I dropped from 120 to 112 within about a month. I think it's essentially from the much lower carb intake, because if I eat gluten-free grains I will gain weight, and if I avoid them I can stay 112-115. I eat a ton of fruit and veggies, but it's still a lower carb diet than I had before, plus drinking wine instead of beer must help.