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Mother Of New Celiac

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I posted this under the kids' section but didn't receive a reply. I am hopeful maybe someone here can help me out.

I am the mother of 12-year old Morgan. Morgan has always been what I have called a stomach achy kind of gal. She is very hard on herself and demands perfection so we assumed, as did her doctor, that she was reacting to stress. Morgan does not have a distended stomach, diarhhea, constipation, funny looking poop or any other common symptoms of celiac disease, except that she does have a lot of stomach aches which have increased in frequency. She also has dark circles under her eyes. She was very colicky as an infant, despite being breast fed for the first 8 months of her life. I was very careful about my diet but it didn't seem to help.

I had her at our pediatrician's office last week because of increased stomach aches. She was tested for celiac disease. Her results are as follows:

(tTG) Ab, IgG 7

(tTG) Ab, IgA 35

Gliadin Ab IgA 15

IgA, serum 132

Can anyone here please interpret them for me?

Our pediatrican is out sick and we have not been able to discuss this with him but an associate of his considers this to be a positive test and has referred us to a pediatric gastro, whom we have not yet seen. My understanding is that the gastro will want to do a biopsy but I question whether it is necessary. My question is why do it? If the treatment for her is the same either way, why put her through the endoscopy? I have had one and know they aren't any fun. Also, her labs don't seem that bad, compared to some I have read here. Are these numbers conclusive for celiac disease?

I understand that celiac is herditary. Does this mean that either my husband or I, or both of us, have it? I was diagnosed with pancreatitis over a year ago after a major pancreatic attack which seemingly came out of the blue. I had mildly elevated liver enzymes for a couple of years but no symptoms. I have read that pancreatitis is sometimes caused by celiac disease. I do not drink alcohol, the typical cause of pacreatitis. I was also diagosed several years ago with fibromyalgia but have beaten it with the help of a naturopath and have Interstitial Cystitis. According to my ND, I have a weak immune system and am now wondering if I have celiac disease.

This website has been so helpful. I have spent hours here and have learned so much. I appreciate any help. :)

Thank you.



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Welcome Kenda!

My son (11) and husband both are celiac. My son was dx after a very long and dramatic crisis, my husband after being tested. My son has had several 'scopes and they aren't so bad for children, they put them under (and you can ask to have them sedated before any IV is put in) with few ill effects. My husband had "ambiguous" blood tests but decided to go gluten-free without a biopsy. There are lots of people here who don't feel they need the biopsy, but that's an individual decision.

I would go see the peds GI about the test results. Different labs use different values so it's hard to know, but in general, an elevated (borderline positive, or positive) tTg test is a very strong (unlikely to be a false result) and specific (can't be anything else) indicator of celiac disease.

Yes, it is a genetic autoimmune disease. You and your husband should be tested as well. You could be carriers and not actually have an active case. It's important NOT to go gluten-free until all the testing is done. You will need to advocate strongly for your child, although peds GI doctors are -- as a group -- pretty good people. Ask "what will that test tell us" and "what do we do now" and "what happens next/after that" kinds of questions. Write them down, so you remember to ask!

In the end, you've nothing to lose by trying a gluten-free diet. If your daughter is celiac, she will get sicker and sicker. Dark circles are a common celiac symptom, btw. If she's not, you won't see any difference after 6-8 weeks. My husband had only slightly inconvenient and unnotable digestive problems, but after only 2 weeks of gluten-free diet he felt better than he had "in years." Be warned that the beginning of gluten-free life is very confusing, disorienting, and frustrating -- and there's some grieving for bread! -- but IT DOES GET EASY.

Good luck! Let us know how it's going :)


mom and wife to celiacs


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Hi Joanna,

I had the celiac blood test today so I should get my results in about a week. My husband will get tested as well. I'm surprised he's willing, he's afraid of needles. :ph34r: I started my daughter on a gluten-free diet a week ago and she improved within 2 days. Her stomach is still upset a bit but nothing like it had been for weeks preceeding the diet change. I ate gluten-free with her but started eating wheat and gluten again a few days ago, wanting to eat it to get an accurate blood test. My doctor assured me that being gluten-free for just a few days wouldn't change the test results since I started eating it again up until the time I did the test.

Her appointment with the gastro isn't until April so we have a ways to go. I'm leaning against the biopsy but will listen to what the gastro has to say. I already have a gastro becuase of my pancreatitis and will see him if my test is positive. I'm anxious to see if he'll attribute the pancreatitis attack to celiac disease if my celiac disease test is positive. If that's the case, simply eating gluten-free, which I plan to do anyway, will prevent any further attacks, which would be a huge relief.

I ordered several gluten-free foods on line for Morgan to try, we also have a Wild Oats here so shopping gluten-free has been extremely easy. I have been pleasantly suprrised at everything we have tried. The cookies and brownies have been excellent, better than most so this has really helped her desire to be gluten-free. I have always prepared meals with very little wheat or gluten so the change for me in cooking is very slight, it's sweets and eating out that are the most challenging. So far, so good!



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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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