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Sort Of Diagnosed?

3 posts in this topic

Hi everyone, I'm new here and was hoping to get a little input on my test results and diagnosis.

After going to a holistic nutritionist to improve my overall health, we discovered that I am gluten intolerant. I went to my doctor to get tested for celiac disease. I know I am at an increased risk due to already having hashimoto's disease. I have a list of symptoms, most noteably excessive bloating and gas, floating smelling discolored stools that I can sometimes see my food in, not sleeping well, feeling hungry even after eating a meal, tired, achey, and fatigued muscles. I did the self-test for gluten intolerance and definitely reacted. I then had to load up on gluten for a few weeks before I could get my blood drawn for the medical tests.

My doctor ran the following:

Metabolic panel

sodium 139 range 135-145

potassium 4.0 range 3.5-5.0

chloride 105 range 98-107

co2, total 25 range 23-31

anion gap 9 range 5-18

glucose 83 range 65-100

clacium 9.3 range 8.5-10.5

bun 9 range 8-25

cratinine 0.78 range 0.57-1.11

bun/creat ratio 12 range 10-20

GFR >60 range >60

IGA tissue transglutaminase AB

<1.2 range <4.0

I know now that she should have run more tests instead of just this one. Anyway, when I got the results my gut feeling told me there was something more. I at least wanted to get checked for a wheat allergy or get a referal to a gastroenterologist after this. I told my doctor this and told her the reason was because I was feeling so crappy while eating all this gluten. All my symptoms came back. Plus, my stool became an obvious green color. It was slowly transitioning to a grayish greenish color already, but now it is bile green.

Anyway, my doctor's assistant got back to me today. I was going to just summarize what she said, but I decided I'll paste it here so you can see her actual words for yourself.

" I talked to Dr. xxx this morning and she said the test she ordered for celiac disease is about 80% accurate. She said the gold standard would be a tissue biopsy which she feels is not needed at this time. Considering your symptoms its pretty clear you do have celiac disease, which is the same as gluten intolerance. She recommends you cut out gluten products and you should start to feel a lot better."

I can't help but feel like I've been left hanging. I would feel better getting a definite yes/no answer about having celiac. For my family health history, and to know to what extent I need to avoid gluten. If I just have an intolerance I just won't eat it. But, if I have celiac I would be sure to avoid cross-contamination due to the possibility of getting damage done to my digestive system without any symptoms to make me aware. She won't order more tests. I just feel a little frustrated and am not sure I should even say I have celiac disease.

Could I get some input? Thoughts? Should I seek out further testing? What should I call myself- celiac or gluten intolerant?



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Celiac disease and gluten intolerance are NOT the same. Celiac is an autoimmune disease and puts you at risk for more autoimmunity and some cancers. You are absolutely right that the consequences for eating gluten are higher if you're celiac.

Your doctor is unusual in realizing that the TTG test only catches celiac 80% of the time. Many doctors don't know that. It means there is still a 20% chance you're celiac and the test simply missed it. You need more blood testing at a bare minimum because sometimes people will be positive on different tests in the celiac panel.

You need to ask for:

-Total IgA. None of the IgA tests are valid if you don't make normal amounts of IgA and low IgA is a risk factor for celiac.

-It would be good if your Dr. can get the lab to do TTG IgG if your IgA is low. This is called "reflex" testing and many labs will take reflex orders.

-Deamidated gliadin IgA and IgG. This is a newer test that is somewhat more sensitive than TTG.

-Possibly anti-endomysial IgA, which is another autoimmune test for celiac. Not all labs run it any more because it's an older test that is done by hand.

Some people have all negative blood tests and are still found to have celiac on biopsy. It's hard to get your Dr. to justify a biopsy without any positive bloodwork though.


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My creatinine and anion gap were a little high. Is that odd with celiac disease?


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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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