Does This Sound Like Celiac ?

[Susan Kelby]

Hi there. I've been reading the forums all day, and don't want to waste your time with dumb questions, but thought I'd go ahead anyway. I had a heck of an attack this morning, and thought it just might be celiac. I'd appreciate your opinion:

I've had digestive problems for 20 years - typically, a run to the bathroom about 20 minutes after a meal. I had an ulcer when I was 16, but it sort of went away. I've also had a wierd problem for the past 10 years where I feel naseous every morning unless I take motion sickness pills. Oh, and did I mention depression ? Well, anyway, several years ago, I went on the Adkins diet and lost 30 pounds, and also lost all my digestive problems. Note that I was VERY strict, and basically ate no carbs at all - no sugar, no starch. Then a year ago I went on vacation and fell off the wagon and started eating badly again. What started happening was that every so often about an hour after breakfast I would have a terrible attack of stomach pains, sometimes causing me to vomit (sorry to get gross). My doctor suspected gall bladder, however sometimes the attacks would happen after eating dry Cheerios for breakfast, which wouldn't trigger a gall bladder attack, and also didn't explain why the attacks only happen in the morning. I had a gall bladder test which showed my gall bladder wasn't quite functioning correctly, but the surgeon (thank goodness one with brains) didn't think my problems sounded like gall bladder and suggested going low-fat and see what happens. I've been left in a quandry between Adkins and low-fat, which are basically incompatable.

This morning I had the mother of all attacks, after eating lots of breaded chinese food yesterday for lunch and biscuits and gravy last night for dinner, and I started thinking about Celiac, which I'd heard about on People's Pharmacy. I called my doctor to ask to be tested for Celiac, but he won't be in until tomorrow.

So I've spent the day with a very sore tummy, afraid to ever eat anything again, reading this forum. So, do you all think I might have celiac ? The absence of symptoms while I was on Adkins is what really makes me wonder. But then there are lots of times I eat bread or noodles and nothing happens. I just don't know what to think. I'd appreciate any thoughts anyone might have.

[celiacgirls]

It sounds like it could be celiac or at least gluten intolerance to me. You could have your doctor test you for it, do Enterolab testing, or just try a gluten free diet and see what happens. For some people, it is important to have an official diagnosis. I personally like not having it on my insurance and know I can follow the diet strictly without the official dx. If you are going to do the testing through your doctor, you need to keep eating gluten.

Be aware that the blood test may not indicate a problem when there is one. My daughter was tested several times and was negative. She continued to complain about her tummy and feels better without gluten.

[Susan Kelby]

It sounds like it could be celiac or at least gluten intolerance to me. You could have your doctor test you for it, do Enterolab testing, or just try a gluten free diet and see what happens. For some people, it is important to have an official diagnosis. I personally like not having it on my insurance and know I can follow the diet strictly without the official dx. If you are going to do the testing through your doctor, you need to keep eating gluten.

Be aware that the blood test may not indicate a problem when there is one. My daughter was tested several times and was negative. She continued to complain about her tummy and feels better without gluten.

thanks for the response. I guess I'm not all that hung up on having an official diagnosis - and I'm not excited about testing. And I don't like the idea of keeping on eating the gluten and risking another hellish day like today !!!!!! The only thing is that if I do end up with celiac, then I'm going to worry about my daughter. She is nine, and her only problem is year-round runny nose allergies, fixed by taking claritin daily. Could that be celiac, or would a wheat allergy be more likely ? I have the same problem; we both went through the horrible skin tests a couple years ago but couldn't find what we were allergic to. I'm sick of being sick !

Susan

[LKelly8]

Just to make things even more complicated . . .

Gall bladder disease and celiac often coincide. I was diagnosed a year ago with celiac and now I'm having typical gall bladder attacks. (Nausea after high fat meals, pain/sore spot in the upper right abdomen, etc)

Here's a page from this site on gall bladder and celiac

[Lisa]

Susan:

I just wanted to add that good advise was given. So it you choose, to go gluten free without testing, it can be a very complicated issue. Gluten is everywhere. If you do chose to go that route, please check back in with us for the basic start up product brands that will insure that you are totally gluten free.

If you choose to be tested by Endo. lab, or blood test, or endoscopy, you must continue to eat gluten or your result will not be accurate.

Hope you feel better soon.

Lisa

[Susan Kelby]

Susan:

I just wanted to add that good advise was given. So it you choose, to go gluten free without testing, it can be a very complicated issue. Gluten is everywhere. If you do chose to go that route, please check back in with us for the basic start up product brands that will insure that you are totally gluten free.

If you choose to be tested by Endo. lab, or blood test, or endoscopy, you must continue to eat gluten or your result will not be accurate.

Hope you feel better soon.

Lisa

What I was thinking of doing was to greatly reduce gluten, but still eat a little every day until I have the blood tests or Endo lab test. It doesn't sound like the endoscopy is worth it. It sounds like it only takes an iota of gluten to cause problems, and since it's so hard to completely eliminate it anyway, it would be easy to just cut down until the tests and maybe I wouldn't have a full-blown episode like I had today. And it will give me a chance to eat up some of the last gluten-filled treats I have in the kitchen !

I was out at Odd Lots and happened across Pamela's Chocolate Chip Cookie Mix, and had that for dinner (my stomach still hurts so what the heck I'm going to eat whatever I want). They were really good !

Susan

[Lisa]

Susan:

The endoscopy exam is considered the "gold standard" of diognosis. If you choose to get dxd' in that manner...full gluten diet.

If you want to experiment and get totally gluten free, you must be totally gluten free (shampoos, creams, toothpaste, lipstick, ie. anything that can get into your mouth.)

If you suspect that you have Celica, you have two choices:

1. Immediately go gluten free and see if you symptoms will subside. You also need to know that it may take weeks, a month, or many months to feel the healing, depending on the amount of damage to your small intestines.

2. You can continue to eat gluten and make arrangements for testing. I did not go the Engo-lab route, I went for the biopsy which confirmed full flattening of the villi.

Either way, Susan, you can't do it half way. It is either all or nothing.

I hope that this is helpful to you.

Lisa

[celiacgirls]

If you do decide to do the Enterolab testing, you can stop or cut back on gluten before the test. It will detect gluten intolerance for a while after you stop eating it. For months after, I think, but you would need to check with them to be sure.

My daughter had been gluten lite for at least 6 months and she was still positive. She would eat a cookie sometimes and I didn't worry about cc, but other than that she was gluten-free.

[elonwy]

As far as your daughters allergies, as a child my main issues were constant runny nose, ear infections every couple months and chronic bronchitis. I was also tiny and skinny. Wasn't until after around 22 that I started getting tummy issues and all the other junk. If you test positive for Celiac, every first degree relative in your family should get tested for it, symptoms or not. I managed to convince my family of that, and we found a whole bunch of celiacs.

Elonwy