Search Results for 'celiac'

[Anonymous]

celiac 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

[Anonymous]

Stacey- 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!

[Anonymous]

Hi 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.

[Anonymous]

Yes, 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.

[Anonymous]

hailey 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.

[Anonymous]

Thanks 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.

[Anonymous]

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

[Anonymous]

Stacey, I hope that they are able to give you some answers soon. I’m glad that the rest of the results look good.

[Anonymous]

i’m sorry—-but i think this is one of the most bizarre things i have seen suggested by a doctor on this board. sylvia was failure to thrive, had major reflux, and went throught times where she spit out much of her food. a g-tube was hanging over her head twice. we did everything we could to put weight on her to keep from getting one. we are in the same situation with one of my celiac twins right now. if we can’t get her eating and putting on some weight, she could end up with a feeding tube at 14 years old. this is only because her weight is incredibly low. your baby is only 10 months old and he is a healthy weight. most babies have some weird quirk or another—-your son’s happens to be that he is difficult to feed—-but you ARE getting him fed. he is only 10 months old—-give him some time.

[hellbennt]

I’ll email her- meanwhile I found this that I’ve sent to her recently:

not sure if this pertains to you and your family or not but this was posted on the yahoobreastfeeding group:

some general info at the link below:

http://www.stayinginshape.com/3osfcorp/libv/i77.shtml

“IgA normally stands guard at the body entrances, intercepting bacteria,
viruses, toxins, and certain food components. The cause of IgA Deficiency is
not known, and it may differ from one person to the next. In fact, NIH says
some people with IgA Deficiency may not have symptoms. Others may experience
recurring ear, sinus or lung infections. IgA Deficiency itself seldom causes
serious trouble. However, people with IgA Deficiency are very likely to have
any of a variety of other problems. They are especially prone to allergies,
asthma, autoimmune diseases such as rheumatoid arthritis and diabetes;
diseases of the gastrointestinal tract, and neurologic diseases.”

I also found this info interesting, though don’t have the link handy:

“IgA deficiency is 10 times more common in coeliac patients than in the
general population. Patients with coeliac disease and selective IgA
deficiency often have circulating antibodies to food proteins; they also
have circulating immune complexes, suggesting that absence of an intestinal
barrier might allow the absorption of antigenic material from the gut.
Antibodies to some antigens might cross react with the host’s
self-components and might indirectly produce autoimmune disease.”

– And –

“Antibodies to food antigens, especially cow’s milk, are common and may be
related to the high incidence of malabsorption.”

[Anonymous]

Well, I searched and searched and did not find Christine’s e-mail. That is good news about the other test results. Hopefully, you will get some more explanation for the low IGA number.

[Anonymous]

Tyler recently had a test for IGA although I havent got the results yet. My doc said that babies with MSPI usually have low IGA, she never mentioned Celiac though. Sorry I cant be of more help.

[Anonymous]

Good to hear that the other big parts are negative. Wish I could
provide insight into the low IgA number but way out of my realm of
knowledge. I hope it all works out ok!

[Anonymous]

Thanks guys. You are all the best. I just love having somewhere to go when there are questions and have this amazing amount of support!

More results came in…I think the lab thinks I am nuts. I’ve been after these results for days!!! I keep calling and calling and finally they are all in!

Two of the big part of the panel for celiac are negaitve:

Endomysial IgA screen – Negative

Tiss.Transglutaminase ab, IgA – Negative

also, these are part of the celiac panel:

Gliadin IgG and IgA’s are within normal ranges.

The only thing that’s odd is the IgA quant serum…It’s very low. I need to call and find out what this means.

debit342006-2-15 15:54:55

[Anonymous]

Stacey, I’m so sorry to hear this. Hopefully this result does not mean that she has celiac, or anything else that is serious. I recall Laura posting somewhere that she has Christine’s email. Good luck. Please keep us posted.