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whattodo

Have I Always Had Celiac Diseass

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Well it has been 9 months since my stomach first started hurting. Before that I have had 2 spells with the same stomach pain with years between them. I must say that the first one happened about 6 years ago.

I have always been a keen bodybuilder although i did not do much weight training. I had always been slim until i started eating enough food to build muscle. I would have to take protein aswell to help as i could never eat loads.

I have however been slightly tired in the evenings but always put this down to going to the gym 5 times a week.

9 months ago i went throught a very stressful time and depression. I didnt eat alot through this and did loose a little weight.

My question is, how long have i had celiac disease (although still not 100% diagnosed, im just certain). What i dont understand is that if it is the same pain as i have had before and it went away with still eating gluten then why is this time lasting longer. The only thing i have done different this time is i have had a biopsy and they have seem that my duodenum has flattened. Could this have been happening before and just got better.

Confused....

Jay


Hope i dont become a nuisance but there are so many questions i need to ask

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Jay: You pose an interesting question that many really can't answer. In my husband's case, he was ill for about 27 years (see his capsule below)..when he was given the blood test for the antibodies the result indicated "strongly positive." I asked the gastro then if my husband just came down with celiac and if not, how long has he had it? The doctor replied that the "strongly positive" shows that my husband has had celiac for a long time, possibly all those 27 years (which we are sure he has).

Now the blood test will have a negative result if you get it after you go gluten free. I don't suggest you do this unless you really want to know this answer.

Some people have said on the board that they did eat gluten and had no immediate reaction...while this could be true in that the stomach/intestines didn't revolt, if you have celiac your body will know it and react to it, whether it chooses to alert you about it or not. I worked with a man who had celiac who cheated and it didn't catch up with him for a few weeks each time he cheated. I used to scold him when I saw him eating a wheat roll with butter in the kitchenette.

Did your biopsy show flattened villi at any point?

D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Jay: You pose an interesting question that many really can't answer. In my husband's case, he was ill for about 27 years (see his capsule below)..when he was given the blood test for the antibodies the result indicated "strongly positive." I asked the gastro then if my husband just came down with celiac and if not, how long has he had it? The doctor replied that the "strongly positive" shows that my husband has had celiac for a long time, possibly all those 27 years (which we are sure he has).

Now the blood test will have a negative result if you get it after you go gluten free. I don't suggest you do this unless you really want to know this answer.

Some people have said on the board that they did eat gluten and had no immediate reaction...while this could be true in that the stomach/intestines didn't revolt, if you have celiac your body will know it and react to it, whether it chooses to alert you about it or not. I worked with a man who had celiac who cheated and it didn't catch up with him for a few weeks each time he cheated. I used to scold him when I saw him eating a wheat roll with butter in the kitchenette.

Did your biopsy show flattened villi at any point?

D.

I have had a biopsy and that came back negative, i had a spell of not eating gluten for about a 2 weeks then a week of eating gluten before the biopsy. They said my duodenum was inflamed and the folds had reduced alot. I have had a blood test but awaiting for the results. Pretty sure that will come back negative as not been eating gluten for the test.


Hope i dont become a nuisance but there are so many questions i need to ask

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Jay....Here are some little factoids I've picked up about this....

* You can have a celiac gene and possibly celiac disease will never actually be triggered. This happened with my grandmother, who died at 99. Her worst physical problem was arthritis.

* It seems that active celiac disease is usually triggered by something....perhaps an emotional event, a trauma, something physical such as surgery...things like that. The triggering event often occurs later in life. With my mom, who has 2 celiac genes, it occurred after surgery when she was in her early 40's.

* More and more doctors are thinking of GLUTEN SENSITIVITY as a broad spectrum which can range from the worst reaction (celiac disease) on one end to zero observable symptoms on the other. Doctors increasingly realize that more people than they ever thought are gluten sensitive. When my mom was diagnosed 40 years ago, they thought 1 in 10,000 might have celiac disease. That figure has been revised down to 1 in 133, and some think a more accurate figure would be 1 in 80 or so. It's not that more people have it, necessarily, but that diagnosis is getting better and more mainstream, despite the fact that humongous numbers of doctors have NO IDEA about it. And now there are suggestions that some degree of gluten sensitivity may affect over 80% of us. Most people have no idea, and simply get vague diagnoses such as IBS.

* A person can be gluten sensitive and be horrendously ill from eating gluten, yet not have celiac disease. Gluten sensitivity in general is far less understood than celiac disease, which only affects about 3% of the gluten sensitive folks out there. The 80% who may be gluten sensitive are up the creek in terms of a diagnosis since doctors focus mostly on celiac disease and known very little about diagnosing "mere" gluten sensitivity...plus, there isn't really a "gold standard" test for gluten sensitivity. So the whole idea of illness caused by gluten is ignored,dismissed, pretty much universally misunderstood. You might be told "it's all in your head."

* The cure for celiac disease AND gluten sensitivity is the same: eliminate gluten from the diet. After a period of time gluten free, many other sensitivities which you have developed may eventually go away.

* A curious thing about reactions to gluten: some people get very sick, immediately. Others get sick a day or two later. Some people never have troublesome reactions....these are dubbed "silent celiacs", and these unfortunate people may never find out they have celiac disease until they get diagnosed with something terrible such as cancer of the stomach. There is a higher rate of some cancers among celiacs, specifically, among untreated celiacs (untreated meaning they continue to eat gluten). When my mom was diagnosed 40 years ago, doctors told her she might get stomach or intestinal cancer as a result of her years eating gluten. The good news is that never happened....she is currently 85 and quite healthy....she has avoided all gluten for 40 years, though!

* Gluten sensitivity can worsen over time. Oddly enough, your body can initially develop a kind of tolerance to gluten--the body does its best to deal with the poison invader gluten, and sometimes your body does better with gluten than at other times. This may explain why sometimes a person will get sick from eating gluten, and other times seem to eat it with no problem. This creates problems diagnosing or even suspecting problems with gluten. For many years, this was true for me. I didn't directly suspect gluten and for most of my life I thought all my problems were related to dairy.

* Eventually, the body's ability to tolerate gluten breaks down and a person will get very sick, or increasingly sick. This happened with me....it got worse over about 30 years, and eventually this created a gazillion other intolerances....at one point I thought there was NOTHING I could eat, I was upset continuously. If you take this increasing problem and mix it with a traumatic or big physical event, then IF you have the predisposing gene the whole thing might actually morph into full blown celiac disease. If you don't have the gene, you might just be just sick sick sick. Either way, you have to eliminate gluten to heal and feel better. Gluten sensitivity (as opposed to celiac disease) is nothing to be dismissed! It's serious, it can make you feel horrible, it can damage your organs, it can cause other sensitivities and reactions.

Hope this helps.

Well it has been 9 months since my stomach first started hurting. Before that I have had 2 spells with the same stomach pain with years between them. I must say that the first one happened about 6 years ago.

I have always been a keen bodybuilder although i did not do much weight training. I had always been slim until i started eating enough food to build muscle. I would have to take protein aswell to help as i could never eat loads.

I have however been slightly tired in the evenings but always put this down to going to the gym 5 times a week.

9 months ago i went throught a very stressful time and depression. I didnt eat alot through this and did loose a little weight.

My question is, how long have i had celiac disease (although still not 100% diagnosed, im just certain). What i dont understand is that if it is the same pain as i have had before and it went away with still eating gluten then why is this time lasting longer. The only thing i have done different this time is i have had a biopsy and they have seem that my duodenum has flattened. Could this have been happening before and just got better.

Confused....

Jay


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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It is an interesting question.

I was 1st diagnosed as an infant in the 60s and unfortunately the prevailing wisdom at the time was that it goes away and gluten could be reintroduced into the diet at age 5.

And I did seem fine. Bright (skipped a grade), somewhat athletic (could dunk @6'1") tho never strong (I blame celiac now). Celiac wasn't supposed to be a problem until I was "old". Well, I guess I got old at 35 and went thru some pretty hellish times before ending up fully gluten-free. Swore it was a matter of months before I'd deteriorate to requiring institutional care.

But even w/out the worst period I know I would've been better off my whole life if gluten-free from the start.

So basically, I have no idea why I was relatively healthy for so long in spite of celiac issues as a toddler. Makes no sense at all.

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CMCM--your definition was great. Actually even helped me understand a little more and I have been gluten free for 7 yrs.

I was not diagnosed as a baby, yet my mom said I always spit up on everything, I always got sick in the car, always had a touchy tummy. When I was pregnant with my 2nd son, who is 31 now, I was sick every other night. Was always much worse when pregnant. By my 4th son, I was so sick, I couldn't see someone else in a rocking chair. My 5th and last child, whom I got pregnant for because I was not absorbing my birth control pills :unsure: (a symptom no one picked up on then)--I was ill all the time, I lost 40# while pregnant. I think my stress point was when my sister lost her first baby at birth, I was pregnant with my 4th son. Then when she got pregnant again, Troy was born 6 weeks early and in Pedatric ICU, I found out I was pregnant with Holly and I felt so bad that I was not happy about being pregnant again and yet my sister was having so much trouble.

Stress in your life is a huge factor. Even now, after being gluten-free for 7 yrs, stress always hits my tummy first.

Yesterday, I had a neurologist tell me that because I do not have an official and I felt free to diagnose myself, then I certainly am not celiac. So, I simply told him, "Fine, if it makes you feel better to call me gluten intolerant, then so be it, either way, I CAN'T HAVE GLUTEN!"

You will find a lot of people in this forum and other forums who have a story similiar to yours. I find that very sad. I think research is a must just to find ways to diagnose celiac disease before it's villi damage.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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