Unconfirmed Celiac Seeking Advice :-)

[tarnalberry]

I'm 25, and had blood tests for gluten intolerance back in May. (It was a panel of five tests, four of which were "negative" (no numeric value on the lab report), and one which was high (antireticulin IgG - only 20% specific).) My doc called this "inconclusive" given that I had been gluten-free for three weeks before the blood test (I know, I know), and suggested that I try a gluten challenge. I did that twice, and thought I felt worse, but was never certain. I tried one more time (a tablespoon of vital wheat gluten in a cup of yogurt - it tastes nasty too!), and thought it was pretty obvious that I had a reaction. And I seem to react when I get something that's contaminated as well.

Thing is, if I am celiac, I haven't been 'active' for very long. And if I am celiac, I don't react incredibly strongly. and at least half of my symptoms are mental and not physical. And even then I don't show too many classic symptoms. (I do show some - bloating and abdominal pain and diarreha/constipation, but not the low weight thing. ;-) ) I do feel better on a gluten-free diet, and I've been pretty good about following it. (At home - my only contamination issues have been at restaurants.)

But I'm feeling uncertain. I talked to my allergist about it (it was my GP who diagnosed me - and took the gluten challenge symptoms as I said them) and he just rolled his eyes. While I don't care so much that he's reluctant to accept it - he's behind on his understanding of celiac - I don't want to deal with that attitude from doctors all my life. I am thinking that I would like something a bit more conclusive (anyone looking at my blood tests would likely say "that's not it"), but honestly, I'm afraid to go back on gluten for the ... what is it? six weeks? that I would need to for a biopsy. (Heck, I've been gluten-free for months now, it might take more than six weeks...)

I don't have a GI at the moment, and hesitate to get yet another doctor. (I've got seven. Seven! Mostly orthopaedic things, though.) Anyone have any advice, suggestions, or stories to tell? I'm not drastically sick, or anything like that, so this is not - yet - a life or death issue. I'm not having a problem with the gluten-free diet - so that doesn't concern me either. I'm just feeling uncertain about all this....

Thanks,

Tiffany

[tammy]

Gee I can only tell you about my experience. I did not test positive when I took the blood test but I was already eating gluten-free. I did not do the biopsy but the stool sample and gene test made it clear that I am gluten sensitive. Technically, I am not celiac however, I must eat gluten-free for life and I should not have wheat products touch my skin.

I hope that helps. Please let me know how my experience might have affected you.

Tammy

[tarnalberry]

I should have added that, since this would be mostly for doctors to believe in the diagnosis, and my choice to go gluten-free, I'm not willing to go the EnteroLabs route. I understand that many people are happy with them, but until I see some peer-reviewed and replicated science on the methodology, I won't be. (That's what I get for getting a degree in physics! ;-) ) I know some of you may disagree with that decision, which I respect, but I'm not changing my mind on that one. :-)

I'm curious, Tammy, why you say you're technically not celiac, given the test results. I hope gluten-free is going well for you.

(And, ironically, I have not noticed any affects from touching wheat - I never had a problem with DH - though I do try to avoid it. :-) )

Tiffany

[Lily]

Tarnalberry,

I had been gluten free for 3 months on my nutritionists advice when my doctor put me back on to do the blood tests. I had already tested a week positive for gliaden antibodies while gluten free. He put me back on wheat for 3 weeks to have the biopsy done which was recently. I'm still feeling very sick from the wheat.

What I will tell you, is that for years, many of my symptoms were mental........horrible depression. I would have times when I felt sick, like I was being poisoned, but it would only last for a few days. I have had low energy levels all my life and I think people just thought I was lazy. Then 2 years ago, I broke my leg, for what the dr. said was unexplainable (I'm thinking now it was poor calcium absorption). This spring it was kidney stones, again poor calcium absorption. I've had arthritis woes off and on since I had a baby. My nutritionist says that it's very common for Celiac's to have a flare up after having a baby (the doctor's told me it was an odd case of pregnancy induced inflammatory arthritis) and again in their 30's. I wish I had known 10 years ago what was bothering me.

The doctor's don't all seem to know a lot about this disease. I have been asking the doctor's (apparently the wrong ones!) for the last 8 years if this could be from some sort of allergies. Earlier this year my GP laughed at me and said there were no documented cases of food allergies causing joint pain. I decided to branch out on my own and see a nutritionist who said I have all the classis signs of gluten allergies. After that I found this website, which has to have to most information of anywhere! Thank you Scott!!!!!!! The doctor just couldn't seem to understand why I kept complaining of a burning sensation and pushing out on my ribcage on my right side along with back pain. I found this sight and found someone who said the same thing. I can't tell you how grateful I was to finally find someone else, doctor's have thought I was a headcase for 20+ years.

Hope this helps you. What I was trying to get at, although you may not have strong reactions now, it will build and get worse if untreated. It may take years, but it will happen.

Lily

[Guest aramgard]

Unfortunately, everyone science has not caught up to Celiac Disease. But we as a people have come to the point of believing everything science says. If you watch the news, one year this is bad for you the next year it is good for you. It took science 50 years to catch up to the fact that I was a Celiac. I started showing symptoms when I was around 14, subtle but definitely there. Then came the dermatitis and the multiple allergies. Only after years of alternating constipation and diarrhea and having doctors tell me I was a hypochondriac, was I finally diagnosed at age 67, because so much damage had been done to my intestinal tract and I had developed so many allergies that they could no longer miss the Celiac. Even then I, after listening to Danna Korn, had to ask for the testing. In some people it takes a lot of damage to your intestinal system for the antibodies to register on a blood test, and many pathologists do not know how to read the biopsies or the biopsy misses the damage because it is spotty. Please, if you think you have Celiac disease, use your own good common sense and try the diet even though your doctor is negative about the whole scenario. You may just feel a lot better in a couple of months. Shirley Whitley

[tarnalberry]

I'm sorry, I guess I wasn't clear. I have been on the gluten-free diet for a number of months now (6 or so). And unless I decide to get a biopsy, I won't go off it. It's hard to say how much better I'm doing because the symptoms are so vague. I do think I'm doing better, but I can't rule out that it's something else, like wheat, not gluten in general. And I don't have clinical evidence for a doctor to believe in - which is the main issue at the moment.

Also, my GP isn't negative about the issue at all - she said "inconclusive" on four negative and one weak positive antibody panel! :-) She tested me immediately when I asked for it, has other patients who have celiac, and took my report on my gluten challenge as I told her about it. It's one of my other doctors, and potential doctors I may have in the future.

I'm not too worried about finding a doctor. My insurance plan will let me self-refer, and my gyn specialist has many patients who are celiac, and there's a celiac specialist in that area (UC San Diego, I think).

I know that I can get worse if I go back on gluten. I'm not even to that point. Right now, I'm gluten free. Even if I'm not 100% sure about the dx (and I'm close), I'm not going back on gluten unless I get a biopsy (and probably repeat blood tests). I didn't exhibit symptoms until about three years ago at all, have no obvious nutritional deficiencies, and am not in horrible health, which I know makes me lucky, but makes this less urgent. The biopsy is the question though. Do I go with further testing, or do I leave the answer somewhat abiguous to the general medical population?

Tiffany

[gf4life]

Tiffany, This is one of the reasons that I did agree to go back on gluten for the biopsy.

I am 31 years old, chances are that I will see a "new" doctor at least once in my lifetime, and statistically more than once! I don't want to have to "prove" my situation to anyone. I want a concrete diagnosis that the medical field will accept without question. I have been treated like a hypocondriac by far too many doctors in my lifetime of illness, and I want to be taken seriously. I plan to be gluten free forever following the biopsy. Any future testing will be while gluten-free to test the healing progress.

I did have the Enterolab tests done, to convince myself that I did have celiac disease, since I doubted myself. But without the biopsy I can't get the medical field behind my diagnosis. Good luck on your decision.

God bless.

Mariann

[coveowner]

I was 61 when I was diagnosed with celiac disease. I was having trouble swollowing and was sent for an endoscopy. When the gastroenterologist asked me if I knew that I had celiac sprue, I didn't even know what it was. Seem that my villia were totally flat. I had diarrhea and weight loss for over 40 years and have had many x-rays, etc, to discover cause with no results. I was told that I was under stress!! (I'm a calm person). I have tried to be gluten free for 4 years but my villia have not grown back. My diarrhea is better but I am never without it!! I'm a good cook and baker, so I am able to make everything I want. There must be a lot of hidden gluten in some things!!! It's very frustrating.

[enigma]

Tiffany,

If I were you I would stay gluten-free since it is a real possibility that you could go through with the gluten-loading, have the blood tests again and even the biopsy and STILL end up with an inconclusive diagnosis or an incorrect one. But this is something that you have to decide for yourself. Frankly, after over a dozen years of dealing with celiac disease and about as many doctors I don't really care what they think or even if they believe me or not. I just look out for myself and do what I know I have to. Listen, I even had the "gold standard" for proving that you have celiac, (yes,a very positive biopsy) and still new doctors will look skeptically at me when I announce that I have celiac disease. So you could go through all that and still have the ambiguity and the skepticism. Make your decision and then confidently live with it. Good luck.

[mannabbe]

Hi Tiffany, Like you, my "diagnosis" is just based on a positive IGG blood test. I had been gluten free for 4 months when the blood test was done, which is why the other tests may not have been positive. That was 3 years ago. For over a year I struggled with whether or not I had celiac.

When I went to new doctors, however, I just told them I had celiac. The docs NEVER questioned my diagnosis. Odd, but true.

Frankly, however, that didn't help my own decision process. What did help was time - and experimentation. As time passed I either became more sensitive to gluten, or started noticing it more. For example, 3 years ago, Rice Dream rice milk was not labeled as containing gluten (but it did). I noticed that whenever I ordered rice milk latte's I would get stomach aches and brain fog. Another thing I did was start looking into the possibility that other family members have celiac; my aunt who probably has it refused to get tested, so that didn't help. But maybe that's any idea for you.

Here's the most important thing I have to say to you: it is now clear to me that I've had celiac my entire life. My intestinal symptoms didn't start until I was in my mid-30s. In my 20s, my symptoms were fatigue, brain fog and dark circles under my eyes. I would give anything to be back at your age and to go gluten free (where's the clickable face with tears in eyes when I need it?) I could avoid the osteoporosis I have now (at age 42), and I could get back all those years of fatigue and brain fog.

wishing you well, Laurie

[sunny13]

Tammy,

You explained in your earlier post that you have received confirmation that you are gluten sensitive through a stool test, as opposed to biopsy. I tested positive for both IgG and IgA but negative for the ttG. I assume (and from doing my own research) that this suggests that I am gluten sensitive. I am just wondering if such positive results definitively point to gluten sensitivity. Can anyone tell me if positive results on the IgA and IgG can reflect something other than gluten sensitivity? I am on the verge of starting a gluten-free diet -- my doctor is of little help. My big question right now is whether to start the diet or pursue further testing. I know the options are biopsy (my doctor is resistant since ttG was negative) and stool test (if my blood tests already tell me I'm gluten sensitive then this seems unnecessary). Any thoughts???

Thanks so much!