Home › Forums › Just For Fun › Keeping In Touch › Update on Hailey – Celiac Possibility
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February 15, 2006 at 8:09 pm #1618AnonymousInactive
sounds like she might be IgA deficient. IgA deficiency is 10 times more common in people with celiac. celiac can also cause IgA deficiency. one of my kids is IgA deficient, since the test that our ped gi ran tested IgA levels, it did not tell us if ian has celiac disease. we are in the process of trying to get a different test run on him, but our insurance is being difficult. celiac disease is genetic, someone has to pass on the genes for it.
kevieb2006-2-15 20:9:52
February 15, 2006 at 8:35 pm #1619AnonymousInactiveThanks again guys. I did a ton of research today. I *think* (hope, whatever) that the reference range of IgA’s on the lab results are an adult’s range. Hopefully, I can get in touch with the doctor tomorrow.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=95 847
IgA measurement. Serum IgA levels were measured by nephelometry; all reagents and instrumentation were purchased from Beckman Coulter, Inc. (Fullerton, Calif.). IgA levels were considered deficient when they were less than the lower limit of established age-dependent reference intervals. These limits were 70 mg/dl for teenagers and adults, 23 mg/dl for children 3 to 12 years old, and 17 mg/dl for children <3 years old.
February 15, 2006 at 8:49 pm #1623AnonymousInactivehailey might still be too young to get reliable results on a celiac panel. if it turns out that she is IgA deficient—-then i think that the test results you got are useless for ruling celiac in or out. they were based on tTg IgA levels and endomysial IgA levels—-and if she doesn’t have enough IgA, then those levels are going to read negative even if she has celiac.
February 15, 2006 at 8:55 pm #1626AnonymousInactiveYes, that is why they do a full IgA serum to see if there is a deficiency. I’ve found two sources now that show a different reference range for IgA serum. Hers is within the normal range if these are accurate. I did read something today that the screening is only 90% effective in children under 2. Her Ped GI is taking the approach that if her celiac panel comes back positive that he’ll confirm with a biopsy if negative we won’t worry. She has no other “typical” celiac symptoms other than chronic loose stools. We also have no family history.
February 15, 2006 at 9:53 pm #1633AnonymousInactiveHi Stacey – have you tried a milk-free trial? The reason I ask is that we had a similar issue with James – chronic loose (and stinky) stools, plus some sleep issues. We had started him on milk over the summer, and these symptoms seemed to come on gradually in the fall. We had the RAST, celiac panels, CBC, the test for C-Diff and a Lactose Breath test. Everything was negative/normal. However, when we stopped giving him milk to drink (he still had yogurt and cheese, which he’s tolerated fine since 10 months) the poops cleared up after a week or so and sleep troubles stopped almost immediately. Then, per the GI, we gave him soy milk. This resulted in constipation (for something a little different!) w/ sleep issues. Back to no milk or soy – back to normal poops and sleep. You think I’d be convinced by this point, but no – have tried milk again twice in the last two weeks. First time, gave him some at lunch and dinner – up all night rolling around and screeching. A week later, let him drink some at breakfast, and he woke up after 45 minutes from his nap, rolling and screeching. Now I’m convinced (only have to hit me upside the head 100 times!) He’s not allergic, and he’s not lactose intolerant, but he just can’t handle milk right now. Sorry to hijack – just wanted you to know we had btdt, and what we found out.
February 15, 2006 at 10:00 pm #1634AnonymousInactiveStacey- Don’t let the symptoms or lack of symptoms fool you, many people can carry the celiac gene and never suffer from it others it can be so mild that they never know. Which is what we believe is happening in our family. I have 2 symptoms and my mother has 1 but both very mild. I am in the process of getting tested. If I return negative than my husband will do testing to see if he is a carrier. Kayleigh remains on a gluten free diet and it’s amazing how much better she is health wise so I’m fearful to do a gluten challenge for her to be tested until we are sure there is a genetic link. I hope you find some answers quick for Hailey so she too can be on the healthy train! Good Luck!
February 16, 2006 at 9:27 am #1652AnonymousInactiveceliac is a difficult disease to diagnose. my 3 girls all had elevated tissue transglutaminase levels, that many in a family is kind of a no-brainer. 2 of my girls had biopsies—neither showed any damage, but an endoscopy can only go about 6 ft into the small intestine—-that leaves alot of small intestine that can’t be seen. also, celiac can be very patchy, so even when biopsies are done, celiac can still be missed. molly does not have any typical celiac symptoms. tianna, who is the only one of my three girls who looks sick, does not have typical celiac symptoms, but she has rashes that suggested dermatitis herpetiformis—-which is a skin manifestation of celiac. there is no history of celiac disease in our family.————-this is not to say that i think your daughter has celiac, it’s just to say that many people with celiac do not have any symptoms, but the intestinal damage is still being done.
kevieb2006-2-16 9:30:48
February 16, 2006 at 12:18 pm #1680AnonymousInactiveThis is definitely a tough situation. I requested the celiac screening. Her Ped GI thinks she is absolutely fine and has what is called toddler diarrhea. Her only issue is chronic diarrhea or loose stools. She has no other issues really – sleeps fine, eats fine (for a toddler), acts mostly fine (for a toddler), is rarely sick, etc. We are really just trying to confirm a diagnosis of toddler diarrhea, which is done by the process of elimination. We did do a milk free diet (all forms including hidden dairy) for a month. I didn’t notice much of a change so I don’t think that is the issue. If the doctor tells us all is ok with this blood test, I think we’ll
Christine ~ I thought you said that celiac disease is hereditary, but there is no history in your family?
February 16, 2006 at 3:51 pm #1694AnonymousInactiveyes, it is hereditary—but we don’t know if it is kevin or I or both of us that carries the gene. there are 2 genes that are known to be involved with celiac—-i have heard some people say there may be more genes involved, but i have never read anything that confirms that. as far as we know, no one in either of our families has ever been diagnosed with celiac. it is thought that celiac is far more prevalent then they used to think. instead of 1 in 5000, the estimate is now 1 in 133. many celiacs do not have any symptoms. some people first learn they have celiac after they have been diagnosed with intestinal cancer or some other autoimmune disease. between kevin’s family and my family there are at least 8 different autoimmune diseases. my father has an allergy to wheat—i told him he should get tested for celiac, but he thinks that wheat is his only problem, not gluten. earlier this week my mother asked to have a celiac screen done—–finally someone took me seriously. family odds are 1 in 20 for first degree relatives and 1 in 39 for second degree relatives. they have discovered that alot of people with celiac just don’t have what used to be considered “normal” celiac symptoms. we will continue to test our family periodically for the rest of our lives since celiac disease can be triggered at any time in someone who has the gene.
February 18, 2006 at 9:48 am #1827AnonymousInactiveWell, I finally talked talked to the Ped GI. He started off by saying that her celiac panel came back negative but that her IgA values were “quite low”. The reference range on the sheet remember was like 80-400 or something like that. So, I asked him if that IgA reference range was for a child her age. He told me to hold on while he looked it up. He came back on and said “well, she’s fine the range for a child ages 1-2 is 14-106”. Thank goodness I looked this up myself or I would have been worried about it.
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