Does This Sound Like It Might Be Celiac?

crstnol · February 27, 2006

My 17 month old daughter has had a terrible time with food intolerances. Her official dx right now is milk/soy protien intolerance as she had blood in her stools and cried all night long when I was consuming dairy and soy (I breast feed). Her 4 year old sister was the same way as a baby and was on Allementum until she was 18 months old, so that's where we started from. Even after completely eliminating all dairy and soy, she continued to have mucousy stools laced with blood. At 4 months old, I went on a total elimination diet where I ate only chicken, rice, peaches, potatoes and sweet potatoes for 2 months with little improvement. She finally saw a GI doctor at 6 months who put her on Vivonex TEN formula and after 10 days on that, the blood cleared from her stools but she was having terible eczema so we went back to breast milk. At 6 months she was dropped from the 50% to the 25%, at 9 months she dropped to the 10% so we started doing monthly weight checks. At 10 months she was at the 5% line, at 11 months she was below the charts, at 12 months she re-bound a bit to the 3% line, at 13 1/2 months she was just over the 3% line, at 15 months she was off the charts again. Currently she is just under the 5% line, so she is doing better. We had blood work done about 2 weeks ago that check for celiac among other things and most of the celiac screen came back normal, but the gliaden antibody level was 94 (they said normal would have been under 20), so they said it appeared she had a severe wheat allergy. Last week we had RAST testing done at an allergists, and the Wheat, along with 8 other items including dairy and soy, came back completely negative. She is scheduled to have a scope and biopsy done on March 16, but I'm wondering if it's possible to have celiac even with a negative blood test? Also, her sed rate (measures inflamation in the body) was high, as was her IgE level. Everything else was completely normal, except her cbc was showing borderline anemia. Do you think this sounds like we may be dealing with celiac? She eats bread (diary and soy free) all the time. In fact, that's one of the only things I can get her to eat!

Any help would be great!

Christy

lovegrov · February 27, 2006

Which test came back at 94? Igg or Iga? If Iga that's a positive test. If Igg it's a little more doubtful, but I've known people with celiac and only the Igg positive. The failure to thrive, diarrhea and unexplained qnemia are certainly major symtpoms of celiac disease, but of course I can't say that's it for sure.

If nothing else works, I'd try going gluten-free. I know it isn't easy and while I agree it's best to get a definite diagnosis if possible, the ultimate test is whether a person improves or not.

richard

crstnol · February 27, 2006

They didn't say if it was IgG or IgA. They only told me "gliaden antibody" The scope and biopsy should show for sure though right?

Christy

Fiddle-Faddle · February 27, 2006

Hi Christy,

I'm so sorry to hear all the difficulties your daughter has had. Here are some prayers and good wishes coming your way!

Please be careful about vaccines for your daughter. Two of my children (also breastfed) had MAJOR reactions to vaccines, including severe blistering eczema that lasted for 8 months. I am not anti-vaccine--I do think that some vaccines (like polio, for example) are a must even if they are risky. But you do NOT have to administer all vaccines, or keep to the "recommended" schedule (recommended by the pharmaceutical companies who are in this business for $$). Spread them out if you like, and make sure that the ones you get come from a single-use vial--the multi-use vial is preserved with thimerosal, which is 50% mercury. Mercury crosses the blood-brain barrier, and is implicated in both autism and leaky gut. The total amount of mercury in the "recommended" vaccine schedule is something like 125 times the EPA limit for a healthy adult. Mercury is still in the flu shot, and (I think) the chicken pox shot. It's not supposed to be in most of the childhood vaccines any more, but the pediatricians are using up old stores.

Sorry I don't have the exact website, but try googling Dr. Andrew Wakefield--he was studying a group of autistic kids in London who had severe stomach problems (the rate of autistics who have celiac is staggeringly high) and found that nearly all of them had traces of the MMR (which never did contain thimerosal, interestingly) in their gut, YEARS after having had the shot. In the comparison study of non-autistic kids, NONE of them had the MMR in their gut.

He is not anti-vaccine; he never said, "don't get vaccinated," or even "vaccines cause autism/celiac." What he did recommend was that you should get separate Measles, Mumps, and Rubella shots a year apart (he thinks that giving them all together might be part of the problem), and that vaccines should not be preserved with thimerosal (which has been banned in over-the-counter products like contact lens solution for years, but we've been injecting it into our children's bloodstreams anyway).

I wish someone had told me about this earlier--I found out one week after my oldest had his second MMR and my second child had his first MMR. My daughter, who has not had any of these problems( yet, anyway) , has had her vaccines much more widely spaced than the "recommended" schedule, and we have not allowed the pediatrician to give her more than one at a time, nor has she had any vaccines that contained thimerosal.

Good luck!

Fiddle-Faddle · February 27, 2006

Which test came back at 94? Igg or Iga? If Iga that's a positive test. If Igg it's a little more doubtful, but I've known people with celiac and only the Igg positive. The failure to thrive, diarrhea and unexplained qnemia are certainly major symtpoms of celiac disease, but of course I can't say that's it for sure.

If nothing else works, I'd try going gluten-free. I know it isn't easy and while I agree it's best to get a definite diagnosis if possible, the ultimate test is whether a person improves or not.

richard

I've been hunting for a simple and clear explanation of what the IgG and IgA results mean, but can't find anything on online. Do you know where I can find one?

My husband (he's a chemist) says that IgG is the secondary response of the immune system, and means that a reaction has happened before, but he went into all kinds of technical chemist details that I couldn't wrap my mind around while I was trying to adapt a wheat recipe to gluten-free while helping my kids with their homework..... :rolleyes:

lovegrov · February 27, 2006

Here's one explanation. I'm not a science person. Essentially, if your Iga is high you almost certainly have celiac, although you can have a false negative. Igg, on the other hand, is not as specific to celiac.

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As for the biopsy, no celiac test is 100 percent. Your child needs to be eating gluten and you should ask how many samples the doctor will take. He needs several from different spots.

richard

Fiddle-Faddle · February 27, 2006

Thanks, Richard!

crstnol · February 28, 2006

Thank you so much for the information! I will be sure to ask the Dr. how many samples they are going to take. Now, I know I'm getting ahead of myself here, but IF she ends up having celiac, do I need to push for my son and older daughter to be screened as well? They both had trouble with dairy products as babies, and now we struggle with enviro. allergies, asthma, chronic sinus infections, eczema, etc. Maybe it's not related at all, and obviously, if Lainey's biopsy is negative, we won't persue it with the other kids, but IF it's positive....should we be concerned?

Christy