Questionable Celiac

[aslo]

I have been ill for over a year. It started with colitis type symptoms. The bowel symptoms changed to one soft stool a day, i have not been able to change this.

All scopes, small bowel series , ultrasound are negative.

A month after the onset, started getting shooting pains in the limbs, some numbness, burning feet etc., blood work negative with the exception of slightly high Chrons marker, one slightly high celiac marker. All this was followed by panic and depression.

I dont remember my celiac flag, but if the the flag was 20, my score was 21 on one of the tests and normal on the other.

At the time of the tests i was already, cutting down on gluten, not knowing.

One year later and i still have the soft stool, nausea, belching, neck pain, joint pains, sensory neuropathies, pounding heartbeat etc.

I have tried to be gluten free, but i mess up on a regular basis. I will be out and eat something with bread, or something im unsure of. I havent checked out all my vitamins, toothpaste etc.

I also seem to have problems with sugar.

I know i cant expect a definite answer, but im desperate as whatever this is is ruining my life.

Does this sound like celiac to anyone out there? Anyone with similar symptoms?

Advice?

Thanks

[Jnkmnky]

Would you be willing to get another blood test? If you're routinely glutening yourself, it should work. Just so you know, you will not see a health improvement on a mostly gluten free diet. You must be 100% gluten free for improvement to take place. That's not negotiable. Even small mistakes will make you sick, for days.

[aslo]

Would you be willing to get another blood test?  If you're routinely glutening yourself, it should work.  Just so you know, you will not see a health improvement on a mostly gluten free diet.  You must be 100% gluten free for improvement to take place.  That's not negotiable.  Even small mistakes will make you sick, for days.

<{POST_SNAPBACK}>

I would be willing, but i would have to find one of the countless doctors ive seen, to be willing. The G.I. doctors are the least helpful, perhaps because celiac is a thorn in their side? Dont make much money on it? Maybe im just being skeptical.

I will try to go 100% but its very difficult, especially not knowing if thats the problem or not. Plus i want to be sure im eating fairly well, getting enough nutrients etc. If i knew for sure, i could do it. The g.i. guy saw no evidence in the small intestine biopsy or films, but i understand that is not that accurate as well.

I wonder why i would have one slightly high Chrons marker, and one slightly high celiac marker. This has been one awful year, chronic pain and sickness with no diagnosis. Thanks for the reply.

[watkinson]

Hi aslo,

Jnkmnky is ABSOLUTLEY correct!! You must be 100% gluten-free to get well.

Celiacs disease is an autoimunne diseas. Our immune systems are screwed up.

A normal immune system is supposed to send out antibodies that attack bad bacteria, viruses, poisons ect.

Our immune systems think gluten is the poison and the antibodies come out to "kill" the gluten. The problem is that when gluten is present, our antibodies think our healthy cells are also gluten and kill them too. It doesn't matter whether it's a speck or a bucket full of gluten, the same number of antibodies will still appear and attack the body. Only 100% gluten-free will keep the antibodies doing thier normal job.

Having "accidents" of gluttening is only keeping you sick. You will NEVER heal if you continue to not be gluten-free.

I does sound like celiac symptoms...Did you get the correct blood test? There is a percentage of false negatives at times, it may be worth getting retested. If you do... make sure you are eating gluten regulaly befor you have the tests. Otherwise the antibodies will not be present and of course your test will read negative. Also...Studies have shown that going gluten-free have signifigantly helped chrones' patients as well.

Good luck, Wendy

[julie5914]

Whatever you have, whether it be celiac or not, sounds autoimmune. They are so hard to diagnose. Have you had your thyroid levels checked? You sound hyperthyroid with the racing heartbeat, anxiety and digestive symptoms. (I am not sure if hypertyroid gets loose stools, but hypo can result in the opposite.)

How about your blood sugar?

Keep listening to your body. All of us on this board know what it is like to feel crazy but KNOW that something is not right. You know how your body feels better than any physician, so keep fighting till you get some answers.

[aslo]

Whatever you have, whether it be celiac or not, sounds autoimmune. They are so hard to diagnose. Have you had your thyroid levels checked? You sound hyperthyroid with the racing heartbeat, anxiety and digestive symptoms. (I am not sure if hypertyroid gets loose stools, but hypo can result in the opposite.)

How about your blood sugar?

Keep listening to your body. All of us on this board know what it is like to feel crazy but KNOW that something is not right. You know how your body feels better than any physician, so keep fighting till you get some answers.

<{POST_SNAPBACK}>

Thank all of you for your replies. I had some extensive metabolic panels done as well as lyme, b vitamins and some others, the a1c? for glucose etc. Ive had some of these done twice. I think thyroid is in there somewhere isnt it?

Part of it could be mechanical as well, could have very messed up spine and a bowel problem, i dont know. Some people even think its all from the panic disorder, but of course i cant believe it. In fact i cant believe anything at this point.

Im stuck in a pain/fear cycle thats for sure. It complicated by the fact that ive always been terrified of medical testing, hospitals etc. I am a 50 year old hysterical baby at this point. Depression and anxiety is horrible, i dont know if i can make it through all this. The brain uses the things that upset me the most, like guilt about the daughter im crazy about.

The bowel thing happened 10 years ago also, and really was never resolved. The doctor called it colitis because he couldnt really find anything. Back then he gave me asacol which never really helped. Eventually i kept taking immodium, and basically lived on it since then, taking one every couple of days to slow things down. Of course i didnt have the nerve/muscle problems then.

I also smoke, like an idiot. Quit for 6 years and went back in a time of weakness, now is a terrible time to try to quit. I need a faith healer.

Thanks

[Jnkmnky]

I would be willing, but i would have to find one of the countless doctors ive seen, to be willing.

<{POST_SNAPBACK}>

Why would a doctor have to be willing? Can't you just ask for the test? If you can't get the testing done, go gluten free. 100% gluten free. See if that makes you feel better. If you feel better when not eating gluten, remain gluten free. Being gluten free isn't that difficult and worth it for better health.

[aslo]

Why would a doctor have to be willing?  Can't you just ask for the test?  If you can't get the testing done, go gluten free.  100% gluten free.  See if that makes you feel better.  If you feel better when not eating gluten, remain gluten free.  Being gluten free isn't that difficult and worth it for better health.

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The gp might think its the g.i.'s specialty, the g.i. is a $#$@#, and they all think im

just a nut case.

Anyway you are right , i will try to go free, but ill need lots of case to buy products, and have enough food around, and not eat out much. I understand it can still take months to heal if thats the case.

Thanks

Aslo

[Jnkmnky]

Open Original Shared Link

Here is a link to a post I did for someone who said the food was too expensive. There are lots of great suggestions on the links all around that original question. You can totally afford to be gluten free. You just can't afford not to at least try it. Are you in the U.S.?

[aslo]

Open Original Shared Link

Here is a link to a post I did for someone who said the food was too expensive.  There are lots of great suggestions on the links all around that original question.  You can totally afford to be gluten free.  You just can't afford not to at least try it.  Are you in the U.S.?

<{POST_SNAPBACK}>

Ill take a look. I dont think the food has to be too expensive, its just a total readjustment, and having things available. Many times im, or used to be, out on the road at lunchtime, makes it hard to have meat and vegetables ready.

Even if im home, i usually grab a sandwich lunchtime, but regular lunchmeat isnt good so, you have to have something ready, or prepare something somewhat involved. As i said, if i knew for sure this was what i was dealing with, there would be no problem, but since i dont know, its hard to make a whole lifestyle change on a possibility. I will try though, i have no choices. None that i like anyway.