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BensMom

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Hi,

I hope someone will help me figure some things out. I am a mom of a 5 yo son. This guy has had a rough start. At 6 weeks he started with reflux, then croup, at 2 yo we had full blown out of control asthma, 2 1/2 yo we gained the failure to thrieve dx, and now last year med staff tried to say he had senory processing disorder and ADHD. Now we have discovered fine motor delays and some processing issues. My mom "gut feeling" felt like mds were missing the boat with this kid. I began researching and found out the he had a dairy and wheat sensitivity by getting some allergy test done. I recently had him tested with Enterolab, and this was his results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 23 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal anti-casein (cow's milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

For more information about result interpretation, please see http://www.enterolab.com/StaticPages/Faq_R...erpretation.htm

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: American Red Cross

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health.

Any support or knowledge would be greatly appreciated. I wrote a different support group online and the response was he is not celiac disease/gluten sensitive and there was question re: the lab. I was also told good luck getting anything change in his school environments with out an offical dx. I have done research and talked with the lab staff, and they have answered a lot of questions. It does appear my son seems to have some of the neuro side affects, which would go with his marker. From what I can tell the range for gluten sensitivity and Celiac can vary so much. He is such a sweet kid and is very willing to comply with the diet. I have seen improvement and his eating has picked up even more since we have become stricter on gluten. Any suggestions on information or research articles that I can bring to his peds doc would also be greatly appreciated.

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Ben'sMom, here is your post. I am sorry that I can not offer advise. But, perhaps the other moms of young children can help you.

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You son sounds EXACTLY like my 3-1/2 year old daughter! Refulx as an infant, then full-blown, out of control asthma at age 2-1/2, sensory processing disorder and ADHD, motor delays - my daughter also has a speech delay due to her motor delays and has low muscle tone. She also caught RSV at age 2 from daycare, which is what sealed the deal for her full-blown terrible asthma.

Anyway, we had IgE allergy tests run for her prior to Enterolab testing. She has an IgE allergy to milk and eggs and then we only had the IgA anti-gliadin stool test through Enterolab done for her and it came back positive with a score of 62 after being gluten free for a month.

She also has neurological symptoms to gluten. Her speech slurs, she gets "clumsy", is more "fuzzy" - I honestly believe there is a connection with the whole sensory processing/ADHD/asthma/motor delay thing and gluten. I've read it SO MANY PLACES by SO MANY EXPERTS in the sensory/developmental world. There seems to be a genetic link between the whole thing, like a syndrome of some sort that encompases these issues. They all fall under the autism spectrum diseases - but that's not saying your son or my daughter is autistic - my DD doesn't meet the criteria for autism, and it sounds like your son doesn't either, but the asthma, sensory issues, ADHD, gluten intolerance issues all fall under the same root causes as the spectrum disorders. There's a excellent book that explains all of this by Kenneth Bock called "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies: The Groundbreaking Program for the 4-A Disorders" - this book explains the connection with all of these issues, including the gluten sensitivity and how it can contribute to ADHD and sensory processing issues. I LOVE LOVE this book. Anyway, I think you are on the right track with the gluten thing.

Hope that helps some-

Beth

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Well, from those Enterolab results, it certainly looks like your little one has an intollerance to gluten and Casein. I don't see it mentioned above, but has he ever had the bloodwork for celiac disease? If you take the Enterolab report to his ped, it might give them reason enough to at least run the bloodwork. Maybe your doctor will give you a diagnosis based on the Enterolab results. Be aware - many Doctors look at Dr. Fine's work with much skepticism because he has not published any papers on his results. You definitely have a positive dietart response. I know lots of people with kids on the Autistic Spectrum or with other neuro issues that have seen positive changes since going Gluten-free Casein-free.

As far as what that other support group told you about getting the school to work with you without a DX, what they said was true in our case. The school district would not even talk to us for my son's 504 plan until we had the official DX. I do know that this can vary from district to district, however. If the has other diagnosed medical issues, you may be able to piggyback any food restrictions in to his IEP or 504 plan without the diagnosis. Again, this would be up to the school district and how willing they are to work with you. I would be interested to hear what your pediatrician had to say about that.

Good luck, and congrats on following your "mommy sense"! :)

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