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Confused...please Help!

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Posted 21 February 2004 - 01:22 PM

The only sure fire way to diagnose Celiac is to have the biopsy. As others have said, is is painless. You may not get accurate results if your child is on a gluten-free diet before the biopsy.

If your child's doctor hasn't told you all of this, I recommend a second opinion. A good gastoenterologist will tell you this.

Good Luck.
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Posted 25 February 2004 - 10:02 PM


Our daughter Samantha was the same weight at 15 mos as your daughter. We had done a great deal of our own research after getting lots of strange blood results from a variety of specialists who could offer no real answers on how to HELP our daughter. She had extremely low neutrophil count (part of her white blood cells that help fight infection) which the Hematologist classified as "Autoimmune Neutropenia" and said she would most likely grow out of it by age six but gave no explanation as to how this occurs or advice on how to keep her healthy. By the way, he is very well known for treating kids with cancer and people travel from other states to see him. My sister died of leukemia, so going to this office was a CONSTANT reminder of that and I would get so emotional each time I had to bring her. It served as good motivation to seek my own answers to the questions we had. Anyway, we suspected she had a dairy allergy at first and took her off dairy. At the next office visit, following the removal of dairy, her neutrophil count was near normal. But her weight was still very poor and so I asked her pediatrician for a referral to an allergist since we were beginning to suspect that her food sensitivities went beyond dairy.

Well we waited a very long time to see the "highly recommended" allergist who disappointed us with his complete lack of bedside manner and disregard for our input. Then we waited weeks for the results. Samantha's tested negative for all the common allergens because her IgA was undetectable. The allergist said "although we tested for x, y, & z we cannot tell you whether or not she is allergic to them". He actually told me that her results looked like that of a malnourished child. Mother guilt set in....I was NOT starving my child. I struggled with her constantly to get her to eat. Eating was painful for her. She would get sores in her mouth (associated with the low netrophils...also with Celiac which I later learned...I get them too). I was soooo discouraged...I thought for sure we'd get some direction from the allergist. He did suggest we see a GI as it was obvious that the immune response was happening upon digesting certain "unknown allergens".

So we got that referral and the appointment was set again for a LONG time into the FUTURE. The pediatrician ran tests on her stool for parasites which came up negative. So we decided to take Samantha to Naturopath in the meantime. We were fed up with specialists compartmentalizing our daughter and failing to she her as a whole little person with systems that interact. Upon the naturopath's recommendation and our own research we decided to remove the gluten (& soy which also seemed to effect her) from her diet. Finally, improvement! She was having more good days. Less irritable, less diarrhea (she had been having an average of 6-7 poopy diapers daily), and gaining weight. At our next appointment with the Hematologist her blood counts (other than mild anemia) were also within normal range. We went a couple of more times to this office before seeing the GI...the results stayed & her neutrophils continued to improve.

Finally got to see the GI who reviewed all the info and was very open to our input and research. She could not order the endoscopy because she knew it might show a false negative but said she was 90% certain Samantha has celiac disease with IgA deficiency. Because we were finally seeing a weight gain she agreed not to gluten challenge her for the sake of the endoscopy.

At our next appointment at the Hematologist, Samantha was released! Her tests were completely normal including the anemia.

Still I could see that more improvements could be made with her diet. She seemed to be existing on rice, rice milk and any alternative gluten-free "Carb" she could get. The more ingredients the worse her digestion. Some of the gluten-free ingredients in mixes seemed to cause problems (esp. potato starch and bean flours) as did many of the grain alternatives (quinoa, millet). So I did some additional research and found info on the Paleolithic diet. This diet recommends eating only foods that could be eaten uncooked in Paleolithic times as foods such as dairy, grains, potatoes, beans, were not consumed because they are essentially toxic without a great deal of cooking or processing. It made sense and seemed to spell out all the foods our daughter was having trouble with.

Samantha now eats only meat, fish, veggies, and fruit (mostly organic). It cuts out the guess work and she is doing great. I'd even say she's getting a second chin. Still irritable at times (but it may just be the age and her temperament). We haven't seen a doctor since December! She poops 1x per day and sometimes even skips a day. Days seem long sometimes. I am constantly in the kitchen because she is always demanding food (catching up I guess) and when I get frustrated I need to remind myself that less than 6 months ago I was pleading with her to eat.

I am sorry this is so long but want to say...Please keep seeking those answers. When I felt hopeless our naturopath said to me,"Never forget, the human body has a remarkable ability to heal itself." It was such a simple statement but has kept me striving for the keys to health and not falling too deep into the disease mentality.
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Posted 26 February 2004 - 06:13 PM

That is an absolutely remarkable story, thanks for sharing it. It is a miracle that you figured out your daughter's situation in spite of the lack of help from the MDs you saw. Like you, a naturopath is the first one who tested me for celiac (after no one else could figure out what was wrong with me).

You are a wonderful mother!
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Posted 11 March 2004 - 05:39 AM

can someone give the exact way of requesting an entrolab test? does the doctor request it or do we request it via mail? if so what is the mailing address? thank u
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Posted 11 March 2004 - 07:32 AM

Hi Sarah. You just go to the Enterolab website (www.enterolab.com) and order the test yourself from there. Once you place the order, they'll mail you a collection kit and set of instructions. You only mail back the sample on Monday, Tuesday, or Wednesday. They are helpful and pretty quick to respond if you email them.

In hindsight, I think I would have emailed Dr. Fine and told him what was going on with my daughter and asked him which tests I should order. If you only have a certain dollar amount to work with, he could tell you (I would think) what tests would be most helpful.

Good luck,
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Posted 11 March 2004 - 10:21 AM

I agree with Elaine. I had been going in circles with doctors, and found the Enterolab site on my own and just went ahead and ordered a bunch without fully understanding. If you can get guidance from Dr. F. that might be a good idea.
You can ask for a receipt and then send the claim to your insurance.
Good luck, Nin
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Posted 11 March 2004 - 02:22 PM

Does anybody know if the entrolab results are acceptable proof for the benefits for medical exemptions on taxes and flexible spending accoutns, etc...? Instead of using a biopsy as the proof?
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