Not Sure If I Have Celiac Disease

[criosa]

I'm trying to think of how to say this... I'm 50 years old. My mom was diagnosed with Celiac when she was 44 (?) or so. She was wasting away, and the doctors took a long time to figure out what was wrong with her. To get to my point, I don't have symptoms at all like my mom with the diarrhea, and wasting away, but every time I eat wheat I get a stomach ache. Sometimes instantly, sometimes a little later. Also, in the morning every joint in my body aches, but gets better a few hours after I get up. I'm wondering if this is celiac or an allergy. I also get stomach aches with corn too though - so it's not always a gluten reason. Several years ago, when I was pregnant, I did get diarrhea quite a bit, and asked my doctor if I could be gluten intolerant. He wouldn't test me, and said his wife had the same thing when she was pregnant. I had even told him about my mom!

I plan on asking my doctor for a test again, but would like to be a little more armed this time. I don't really know what to ask for. And since he was so negative the first time, I anticipate he will be again. It's so easy just to avoid wheat, but I think I should find out for sure. Also, if I've been avoiding it, won't that mess up the test?

Thanks for any help.

Criosa

[Lisa]

Criosa:

Welcome to our world. First let me say that you doctor is not well informed.

It is obvious that you react to wheat and corn. This is common among celiacs. Sometimes our bodies tell us more than the doctors can.

If you want to pursue testing, you must maintain a GLUTEN diet. If you go gluten free, you will not have an accurate test and a possible false negative. Others will post with the exact blood test you need to have. There is also a gene test that can be done.

Do not request your doctor to do this test, require him to do this test. Who pays his bills, YOU do. If he refuses, find another.

If you mother has celiac and you are experiencing symptoms, it is highly likely.

You may very well have celiac and doing silent damage with a tummy ache.

I will ask others to post the exact test you need to request, no require.

There is a world full of information here on this site. I would encourage you to read as much as possible. You may find it interesting.

Welcome again.

[CMCM]

Criosa...my story is much like yours. My mother nearly died before she was diagnosed at about 43 or 44, and this was 40 years ago! Doctors knew nothing then, but lucky for her she met one who DID know about celiac disease. She weighed about 80 lbs and was unbelievably sick continuously at that point. Her villi were so destroyed that her doctor didn't know if they would regenerate (they did). She's now 85 and just fine as long as she doesn't get any gluten....if she does, she gets violently ill.

I'm 57 and didn't get diagnosed until a year ago. I never had my mom's symptoms, although I did have a very sensitive stomach and did get sick frequently from various things....not so obviously from wheat, but definitely from most dairy items and corn and other starches just destroyed my system for a day or two. I had a couple of blood tests here and there, which showed nothing remarkable. Finally, a year ago I did the Enterolab full panel and learned I had a celiac gene (from mom), my other gene was a gluten sensitive one (from my dad most likely...and this was a surprise). Also I am sensitive to casein. The Enterolab tests showed antibodies way above the normal levels, so there you have it. I'd really suggest the Enterolab tests...they are very revealing and in the end, not as expensive as going the biopsy route (a lot less difficult, too!).

[Stu]

I have an odd case to relate. I'd never heard of Celiac Disease, all I wanted to do was quit smoking. The problem was that every time I tried over the past three years I would do fine for about five days, then my stomach problems would become so severe I would start smoking again just to keep my stomach under control. I assumed this was simply a manifestation of my 30+ year addiction to nicotine, and just couldn't do it "Cold Turkey" as I had been trying. I spoke to my Doctor about it, and he suggested I take anti acids, or use Prilosec, but I told him they just just seemed to make the problem worse, it seemed to me that my digestive system was "shutting down" rather than becoming overactive. He then suggested I use a Nicotine replacement. Just before Christmas, I tried again, this time using a Nicotine Skin Patch. Once again I started off fairly well, although I was eating rolaids like candy, and taking OTC anti gas remedies. I also started using Natural Digestive Enzymes to help get me through it. After a Christmas Dinner of Clam Chowder and freshly baked rolls, I soon became so bloated with gas I actually had trouble breathing, and afterwards, all the other problems surfaced as well. That very night, I threw the patches away, and went right back to smoking. Just a few days ago, I was searching the internet for additional information on how to quit smoking when I stumbled upon some research which suggested that smoking can delay the onset of celiac symptoms, and in some cases it may even mask them entirely. I decided to try a Gluten Free diet, figuring the worst that could happen was that I might force myself to eat a few Healthy meals. I began to feel better almost immediately, and after just three days, I am amazed! I can't remember *EVER* feeling as well as I do right now, and my craving for nicotine has all but disappeared. Could I have Celiac, or is it "all in my head" as several friends have suggested? My Doctor said he'd never heard of such a smoking/celiac relationship, but he schedueled a visit with a Gastro-Enterologist for me anyway. Hopefully I'll find out for sure.

[Nancym]

Stu, I've read that smoking can mask the symptoms of celiac disease, so I don't think you're that unusual at all. Do a google search on "smoking mask celiac" and have fun reading.

[Lisa]

Stu:

I just want to remind you that if you are considering testing for Celiac, you MUST continue to eat gluten, otherwise your tests will not be accurate.

[Stu]

Stu:

I just want to remind you that if you are considering testing for Celiac, you MUST continue to eat gluten, otherwise your tests will not be accurate.

Thanks for all the advice. Needless to say, I am not thrilled about returning to my normal diet! I've begun referring to ordinary bread as a "White or Whole Wheat Pain", and I've gone from about 12-15 cigarettes a day to 3-4 without making any significant effort to stop or slow down. That in itself simply amazes me. I'm also finding Gluten Free eating more satisfying than my usual fare, and I actually look forward to mealtimes again.

I'm hoping the GE will opt for an Enterolab Stool test which I hear is more accurate than either Blood Antegen or Biopsy, and can be done even after a few months of being Gluten Free. I guess I'd better call them and find out what they want, but spending a whole month going back through GI hell is not a path I want to take!

[Stu]

Ok, there's NO DOUBT in my mind about it, now.

Yesterday, I bought a small crock pot, and made some Pinto Beans using Corn Starch to thicken the sauce. I ate almost half the pot myself, and suffered no ill effects. I wanted to try this because I'd often blamed beans for my problems in the past, and unfairly so, it would seem. I felt fine all day.

Later on the same day, my kids decided we should go out to eat at Chili's. I ordered Coffee, a bowl of chili, and had maybe a half dozen french fries. Within an hour, I develop the following symptoms:

-Bloating to the point of difficult breathing

-Hot, wet Flatulence (sorry there's no polite way to describe it...)

-Abdomonal pains - especially just below the right side ribcage. This was a near constant pain before I went Gluten Free.

-Mild Nausea with *bitter* reflux - NOT acid

-Dizziness and loss of mental focus

-Unexplainable fatigued feeling

-All followed by numerous trips to the bathroom.

Does any of this sound familiar? If I didn't know better, I'd think it was a mild case of Food Poisoning.

Does Chili's use Gluten in their Chili? Or, perhaps the French Fries were cooked in contaminated shortening?

[Ursa Major]

Stu, the contamination could have come from many sources. But your symptoms sound very familiar.

Your doctor is definitely NOT going to order the test from Enterolab. All regular doctors still rely solely on the outdated methods of bloodwork and intestinal biopsies.

NOBODY can stop you from eating gluten-free, and force you to go through with a gluten challenge and those tests unless you decide to do it.

Why don't you just stay on your gluten-free diet, forget about doctors, and order the Enterolab tests yourself? You don't have to consume gluten for those tests to be accurate (and they are a lot more reliable than the blood tests and the biopsy anyway).

[Stu]

Yes, it makes sense to me now. I suppose I really don't need a Doctor to tell me how I'm feeling, and I see no direct benefit from a "confirmed" diagnosis, (unless I can then declare "food" as a medical expense on my taxes? HA! THAT will be the day!...). Thanks for your input. I will cancel with the GE (not looking forward to the Biopsy anyway), and contact Enterolab myself.

I have another question. One of the first things I notice after I've eaten something containing Gluten is that my saliva seems to get "foamy". Has anyone else had that symptom?

Thanks, everyone!