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Mother Of New Celiac


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#1 kdskaggs

 
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Posted 23 January 2005 - 02:05 PM

Hi,

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.
Kenda
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#2 ryebaby0

 
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Posted 27 January 2005 - 07:13 AM

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 :)

joanna
mom and wife to celiacs
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#3 kdskaggs

 
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Posted 27 January 2005 - 03:06 PM

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!

Kenda
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