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Surprised By The Test Results, And A Little Confused


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6 replies to this topic

#1 Whitewall

 
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Posted 09 July 2012 - 04:22 PM

I have been fighting with doctors for about 4 years on behalf of my daughter, Hannah (now 9). I have been convinced all this time that she had Celiac Disease but no doctor seemed to care. Her GI doctor said (when she was 5) that she had IBS and would live in pain the rest of her life and that's just the way it is. The allergist only offered to do a blood test (when I insisted she needed to be check) and of course, with the high false negative rate, it came back negative.
We just got results back from Enterolab and I was not surprised to see the positive result on the gluten test but I was a little surprised by the rest of her results, positive for milk, egg, and soy sensitivity. Here were her results:
Fecal Anti-gliadin IgA 126 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 43 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 39 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 37 Units (Normal Range is less than 10 Units)

So now I am wondering just what this means. Does this mean that she is actually allergic to milk, eggs and soy. Or, does it mean that everything is bothering her because she is irritated from the gluten? Does this mean she will need to permanently be off those items also?
I feel very confused about this.
We have an appointment with a pediatric GI doctor the end of this month, I am a little worried however that, like all the doctors we have seen before, this one will blow off celiac and the test results.

One other thing, after looking at other forum posts Hannah's numbers look really high. Does anyone know what the range is for the milk, egg and soy tests?

Thanks
Kristin
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#2 Lfrost

 
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Posted 09 July 2012 - 05:17 PM

From what I understand, IgE antibodies are what are called 'true allergies'. These allergies cause immediate reactions and at their worst can cause anaphylactic shock.

IgA and IgG antibodies show food sensitivities. These reactions are not immediate and can take up to 3 days to develop. Here are some references that I found:

http://www.webmd.com...immunoglobulins

http://www.integrate...m/test/food.htm

Your doctor probably ran an IgE allergy panel on your daughter.

Also, the food allergy tests that were run here look like they were testing specifically the proteins in the food.

I hope this helps!
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#3 StephanieL

 
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Posted 09 July 2012 - 05:52 PM

. The allergist only offered to do a blood test (when I insisted she needed to be check) and of course, with the high false negative rate, it came back negative.
We just got results back from Enterolab and I was not surprised to see the positive result on the


Actually a negative test result for true IgE allergies is about 90+% accurate. A positive (meaning yes, they have an allergy according to the test) is only 50% accurate.
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#4 Takala

 
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Posted 09 July 2012 - 06:41 PM

It means, that, instead of "fighting" with doctors who don't get the whole food intolerance/allergy thing, you instead take charge of the situation, and eliminate the problem causing foods from the diet. That is gluten, and soy, casein, and egg. And you replace them with whole, natural foods and less processed junk, and you keep a food diary, logging in everything she eats and that goes in her mouth, such as toothpaste, medications, etc.

An allergy is different than an intolerance, in that it does not cause such a quick and severe reaction- but the food is still bad for you, and makes you sick.

After you have what should be successful results, by diet changes, you can, in the future, after symptoms go away, do a "challenge" unless it is a type of severe allergy that causes anaphylactic reactions, in which case, that's a permanent "no- go" for that item. That bad, severe allergy, should only be done in a doctor's office under strict supervision, as a different test than eating it. This food challenge means you re introduce ONE item at a time, and carefully observe the results. A reaction gives you your answers.

Don't be surprised if the ability to not handle soy (in most forms) is permanent. Some can handle small amounts of soy lecithin or fermented soy as in pure soy wheatless tamari sauce, others can not. But this goes with the gluten intolerance. Some also regain ability to handle some dairy, as long as it is lactose free, like good yogurt or hard, aged cheeses. But don't mess around with eggs. Egg reactions can be severe. This may be, or not be, permanent.
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#5 Michelle1234

 
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Posted 13 July 2012 - 04:14 PM

I'm not a medical expert so cannot tell you what to do. But in my own personal experience I developed a bunch of food allergies after being gluten free for 5 yrs. I saw a good holistic Dr. who did some expensive test and determined I had an internal yeast infection along with not enough of one strain of probiotics. After 3 mths of not eating all the food allergy items (including milk, egg, meats, veggies, fruits, nuts) and taking the supplements I can eat all the foods again with no problems. If your daughter has been eating gluten for the last 4 years while she has had problems with it she may have developed pretty sever other gut complications. I don't bother fighting with Drs. If they can't help I accept their limitations and move on until I find someone who can provide some assistance with my situation. In my case it was a holistic medical Dr who practices both eastern and western medicine.
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#6 cyberprof

 
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Posted 13 July 2012 - 04:45 PM

I have been fighting with doctors for about 4 years on behalf of my daughter, Hannah (now 9). I have been convinced all this time that she had Celiac Disease but no doctor seemed to care. Her GI doctor said (when she was 5) that she had IBS and would live in pain the rest of her life and that's just the way it is. The allergist only offered to do a blood test (when I insisted she needed to be check) and of course, with the high false negative rate, it came back negative.
We just got results back from Enterolab and I was not surprised to see the positive result on the gluten test but I was a little surprised by the rest of her results, positive for milk, egg, and soy sensitivity. Here were her results:
Fecal Anti-gliadin IgA 126 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 43 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 39 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 37 Units (Normal Range is less than 10 Units)

So now I am wondering just what this means. Does this mean that she is actually allergic to milk, eggs and soy. Or, does it mean that everything is bothering her because she is irritated from the gluten? Does this mean she will need to permanently be off those items also?
I feel very confused about this.
We have an appointment with a pediatric GI doctor the end of this month, I am a little worried however that, like all the doctors we have seen before, this one will blow off celiac and the test results.

One other thing, after looking at other forum posts Hannah's numbers look really high. Does anyone know what the range is for the milk, egg and soy tests?

Thanks
Kristin

Kristin, just so you aren't surprised when you see the GI: Enterolab results aren't supported by the medical community so most MD's won't consider her a "diagnosed" celiac. You may even get doctors that are defensive, angry or dismissive about Enterolab. You can do some research on this site but Enterolab has never "published" peer-reviewed research studies that are the gold-standard in medicine.

That doesn't mean that Enterolab doesn't have a place - as you can see in my signature, I used it for my son and found good value in the results. But his doctor doesn't consider my DS a diagnosed celiac.

Regarding interpretation of Enterolab, I would call them as others here have done and have a phone-consult to get the answers to your questions above.

As for your daughter, after you see the GI, you should have her go gluten-free, at a minimum. You can also eliminate the other things either right away or wait to see if going gluten-free clears up her problems.

Did you have the gene test too? While there are some celiacs without the major recognized celiac genes (e.g. DQ2, DQ8), knowing her gene profile along with resolution of symptoms on a gluten-free diet may (emphasis MAY) cause an enlighted doctor to diagnose celiac. In order to get the genes in her record, you should have the test for the gene done via an MD.

Just ignore docs that tell you not to go gluten-free. Going gluten-free doesn't cause nutritional problems and a gluten-free diet isn't an unsolvable problem. I went that route with my son, who went from sickly, short and ultra-skinny to healthy, tall (now 6'3" and still growing - size 13 feet!) and happy.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#7 GFinDC

 
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Posted 14 July 2012 - 11:38 AM

She may stop reacting to those other foods after she has been off them for a while and off gluten also. When the gut is irritated it isn't happy with lots of things we throw at it. Her immune system may be in hyperdrive attacking anything and everything that looks a little bit suspicious. But that may settle down on gluten-free. The thinking I have read before is to stay off the suspect foods for 6 months before trialing them again. That is assuming she is doing well in 6 months though and not having continuing problems. There are several threads on the forum about allergies (IgE) toning way down after people went gluten-free. And some people can tolerate foods that bothered them after a while. The most common example cited is lactose intolerance, where the villi grow back and the lactase enzyme is again produced.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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