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Apparently Not Celiac But Still Worried.


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#1 shoequeen

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Posted 14 April 2011 - 12:53 PM

Ok, so I have been on here before, describing symptoms and whatnot, I just wanted to give a final update and see what you all think.

About now, 8 months ago I began having stomach issues, it started slow but then developed into terrible attacks whenever I would eat anything with any significant fat in it, it would start with heartburn, turn into intermittent nausea, urgency and sometimes even the runs. It was mostly random, but definitely aggravated by stress and fat. I had a bunch of testing and they found nothing, and said if it continues to get an endoscopy and colonoscopy. 6 months later, I got those tests too. After I woke up, he said I have celiacís because I had villous blunting and a family history (niece with celiac diagnosed around age 3, but her mother who is not blood relative to me has a sister with severe immunological issues, just saying). I had blood drawn, and found out a few days later that the blood test was negative. I also had the gene test, which came out positive on DQ8.

I went off gluten strictly for 3 weeks and left worse than I ever felt, horrible attacks almost every night because the fat content of the foods I was eating was greater in gluten-free foods than regular foods for some reason. So I decided I had enough and went to a GI recommended to me by the chief of Mount Sinai medical centerís gastroenterology teaching department. I met him and brought everything. He took a detailed description of everything that went on, examined me, and said he doesnít believe I have celiacs, but he did think its either IBS or a pancreatic enzyme deficiency. He asked that I get the slides and his pathology department would re-do the testing, which they did. He said that the damage is extremely mild, and could have been caused by any number of things like a virus I had weeks before. He said it is not celiac, based on the negative blood test, symptoms, the mildness of the pathology and the fact that I felt so bad on gluten free diet after a full 3 weeks. He gave me a medication for the ibs and told me to stay away from fat. He also said that if my symptoms change or donít get better, to come back and he will test for the pancreatic thing, with a horrible sounding stool test.

I have been back on gluten and low fat for the past 2 weeks and feel great. I have only had 1 attack after eating chocolate, which I knew while eating it would bother me. But otherwise, I am totally fine.

I am however; always kinda worried that maybe he is wrong, the other doctor seemed so sure, even though logically it was against all my testing, and his credentials were kinda lacking compared to the new guy. I even asked whether the new doctor wanted to re-do the endoscopy and he said there was no need. I decided in a few months to go back and get another endoscopy to see if anything changed.

Any thoughts on this? I just donít want to wake up 20 years from now, get an endoscopy and be like- omg your celiac, and have been poisoning yourself for the past 20 years when you had the diagnosis so long ago, know what Iím saying?
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#2 GlutenFreeManna

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Posted 14 April 2011 - 02:13 PM

Ok, so I have been on here before, describing symptoms and whatnot, I just wanted to give a final update and see what you all think.

About now, 8 months ago I began having stomach issues, it started slow but then developed into terrible attacks whenever I would eat anything with any significant fat in it, it would start with heartburn, turn into intermittent nausea, urgency and sometimes even the runs. It was mostly random, but definitely aggravated by stress and fat. I had a bunch of testing and they found nothing, and said if it continues to get an endoscopy and colonoscopy. 6 months later, I got those tests too. After I woke up, he said I have celiacís because I had villous blunting and a family history (niece with celiac diagnosed around age 3, but her mother who is not blood relative to me has a sister with severe immunological issues, just saying). I had blood drawn, and found out a few days later that the blood test was negative. I also had the gene test, which came out positive on DQ8.

I went off gluten strictly for 3 weeks and left worse than I ever felt, horrible attacks almost every night because the fat content of the foods I was eating was greater in gluten-free foods than regular foods for some reason. So I decided I had enough and went to a GI recommended to me by the chief of Mount Sinai medical centerís gastroenterology teaching department. I met him and brought everything. He took a detailed description of everything that went on, examined me, and said he doesnít believe I have celiacs, but he did think its either IBS or a pancreatic enzyme deficiency. He asked that I get the slides and his pathology department would re-do the testing, which they did. He said that the damage is extremely mild, and could have been caused by any number of things like a virus I had weeks before. He said it is not celiac, based on the negative blood test, symptoms, the mildness of the pathology and the fact that I felt so bad on gluten free diet after a full 3 weeks. He gave me a medication for the ibs and told me to stay away from fat. He also said that if my symptoms change or donít get better, to come back and he will test for the pancreatic thing, with a horrible sounding stool test.

I have been back on gluten and low fat for the past 2 weeks and feel great. I have only had 1 attack after eating chocolate, which I knew while eating it would bother me. But otherwise, I am totally fine.

I am however; always kinda worried that maybe he is wrong, the other doctor seemed so sure, even though logically it was against all my testing, and his credentials were kinda lacking compared to the new guy. I even asked whether the new doctor wanted to re-do the endoscopy and he said there was no need. I decided in a few months to go back and get another endoscopy to see if anything changed.

Any thoughts on this? I just donít want to wake up 20 years from now, get an endoscopy and be like- omg your celiac, and have been poisoning yourself for the past 20 years when you had the diagnosis so long ago, know what Iím saying?



Can you get a copy of the exact test results to post here? False negative blood test are common--about 20% of celiacs test negative. The fact that you were gluten-free for 3 weeks (? if I read that right) when you had the blood testing done could have made your test false negative. The villus blunting is a concern--what caused it if not celiac? There are other things but "IBS" is not one of them. IBS is not even a diagnosis. IBS is what describes your symptoms--your bowels are irritable so what is causing them to be irritable? You need to ask your dr this and if he can't answer get a new dr.

I do think that you are on the right track with deciding to try eating gluten for a few months and then go back and have everything retested. At least then you can get a firm diagnosis, as it sounds like you need more evidence than villi blunting and positive genes in order to make the change for good.

As far as you not feeling good while gltuen free--how strict were you? Did you get new non-stick pans, a new gluten free only toaster, etc? Also WHAT were you eating that had MORE fat? Obviously meat has fat and dairy has fat. If you ate a lot of cheese your feelign terible could be because you are lactose intolerant. The villi are what make lactase--the enzyme which breaks down lactose. Since yours are damaged your body is likely not making enough to break down large quantities of dairy. Another posiblility is a problem with your gall bladder as those with celiac often can have gall bladder issues too. If your gall bladder is low functioning then you will have trouble with fat digestion. You don't say whether your dr tested your gall bladder but if you keep having trouble with fat you might ask for HIDA scan or at the very least an ultrasound to check for gall stones.
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#3 starrytrekchic

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Posted 14 April 2011 - 03:33 PM

GFMama answered very well. I concur on the gallbladder. Here are a few other things, though.

A lot of people feel worse when they start gluten free. The body will go through withdrawal. Also, people start reacting to smaller amounts of gluten, so foods that were fine before might not be after a few weeks. Additionally, your villi are damaged, which limits your ability to consume large amounts of any one food, such as dairy.

3 weeks is no time at all. It may have seemed like a long time, but a true gluten-free test would last at least 6 months. Saying that you should respond in three weeks is unheard of. It takes months just to get the diet down so that you're not making mistakes, and any one mistake can lead to symptoms up to a week.

A biopsy trumps bloodwork every time.

IBS is not a diagnosis, and any doctor describing it as such isn't any good. It's like going to the doctor and saying your head hurts, and him diagnosing you as having a headache. That's nice & all, but you need to know what's causing the symptoms in the first place.

You need to go back gluten free, check everything you're eating to find out if it was cross-contaminated in factory, learn the labeling laws, check all your meds, supplements, and hygiene products, and stay that way for at least 6 months, to see if you improve. And chuck this new doctor!
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#4 IrishHeart

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Posted 14 April 2011 - 04:57 PM

Ditto and double ditto...these two said it best!!!

I am thinking a positive gene test
plus
blunted villi
equals
celiac.

Blood tests are often wrong.

You felt lousy for 3 weeks because you had gluten withdrawal.

IBS is NOT a diagnosis. It's a catch-all that leaves millions undiagnosed for other diseases, including celiac. Any GI doctor who is too lazy to test says "you just have IBS" and loads you up with drugs. You still suffer every day .

The question is always...WHY IS my BOWEL Irritable?? It's irritable for SOME reason!!!! :blink:

This is my humble opinion.... and 12 years of a bogus "IBS diagnosis" myself.

3 months gluten free--and a proper diagnosis-- and I feel better than I have in years. IBS--what a load of crap. :lol:

Go with your "gut"...stay off gluten AND dairy for at least 6 months and see how you feel. It takes 6 months to 2 years to heal. As you say, you don't want to find out down the road that you made a huge mistake.

Of course, the decision is ultimately yours. Best wishes!!
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