New Here- Help!

[BensMom]

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 Open Original Shared Link

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.

[tiffjake]

Has he ever had the blood work done at the doctors office? Just wondering. I don't know anything about schools, but I would assume that what you have heard already is correct, that they would want an "official" diagnosis before making special arrangments. But I don't know for sure. You should be able to simply call someone and ask about that.

From looking at the test results, I would go gluten free. BUT-not if you are going to get blood work done at the docs office for an "official" diagnosis for the school. You might want to take in this information and show the doc.

I wish I could be of more help!!

[gfpaperdoll]

He is getting the neuro symptoms from the DQ1 gene.

I would personally save my sanity & forget about the diagnosis...

The child has a major problem with gluten & dairy & the dietary trial will be your diagnosis.

Do you want a happy healthy child or do you want to mess around with the medical community for the next 10 years & have residual damage from all the drugs that they are going to prescribe not to mention the emotional damage when they start telling him that he has an eating disorder, is depressed, has anxiety...

oh also start giving him a B12 everyday - my stock post...

[NoGluGirl]

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 Open Original Shared Link

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.

Dear BensMom,

I have a present for you! Welcome to the forum! I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam