Test Results For 4y.o.- Thoughts On Whether To Do Blood Tests?

[crunchy-mama]

We just received our results for his enterolabs testing:

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

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 22 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow's milk) IgA antibody 18 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

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: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one 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 a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

Now, I see that he for sure has a gluten sensitivity. What I am wondering is whether or not to pursue blood tests to try and get a definitive Celiac diagnosis. Does anybody have any thoughts? I know that if I don't do it now it won't be able to be done later. I am very happy in a way, odd as it sounds to have my suspicions confirmed.

[kbtoyssni]

This is a very personal decision. Some people need the "official" diagnosis from a doctor to be able to stay gluten-free, some don't. Some are ok with an enterolab diagnosis being their "official" one and don't feel the need to do traditional testing.

Some pros of pursuing further testing is that it may be easier to get a 504 plan for him when he starts school. But it is possible to find doctors who will diagnose based on dietary response and/or enterolab testing. You may have to search for one, but it's still possible to get an official note from a doctor.

Some cons are that it ma affect his ability to get individual health insurance and life insurance later in life.

There's also the fact that you may not get a positive blood test or scope in a 4-year-old. I'm assuming he had some symptoms if you did enterolab, so I'm guessing you'll keep him gluten-free even if the blood test is negative?

[crunchy-mama]

Here are some more specific questions I have. since he is not showing malabsorption yet does that mean he is less likely to show up positive on mainstream tests? It is my understanding that the stool tests are more sensitive than the blood? Does this also mean that he is more likely to have a negative biopsy as well? Do his numbers indicate that he would be more or less likely to have accurate blood tests? Any thoughts? Pretty, pretty please!

[ShayFL]

What I hate about things like <300 for the fecal fat score is what if it was 299?

The thing is there is no research to show correlations between these things. At the very least you could try a blood test. Chances are it will be NEG. But I think you can go with Enterolab and your son will have to be told that he is not to eat gluten that he has an intolerance for the rest of his life. I know it is hard. But it is healthy. At some point (likely the teen years) he may rebel and eat gluten. At that time he will make his own choices and further testing can be made then. Focus on the now and get him healthy!!

I cant wait to hear a good report from you in response to the gluten-free diet.

[imagine22]

wow i actually changed my mind on what to do in my daughters situation after reading your post

I had done the saliva gene test for my daughter a year ago (which was positive for the genes required to get celiac disease) so then our plan was to do a blood test every year from 3yrs (first test will be done this week) but i had been going to forget about the endoscopy (due to her young age) if she had positive bloods and just assume celiac disease (given i have it too)...but

I just realised the many benefits of a conventional (or proper depending on opinion) diagnosis with endoscopy:

1. if a vaccine is available soon they wont be giving it to ppl who cant 'prove' they have celiac disease (at least not free) (trials are being done now with real celiac sufferers!) [and it would be harder to go on a gluten challenge and cause damage just to prove it later]

2. i live in australia and here you can get free access to a dietician very easily if you have proven celiac disease

3. you cant join the celiac society in australia for support and resources and cooking classes etc if you havent got endoscopy proven celiac disease.

so ive now decided if my daughters blood every come up positive i will have her having the endoscopy - mainly as i want her to have access to developing treatments for celiac disease in the future.

good luck with what you decide its always more difficult when you are deciding on behalf of your children

[crunchy-mama]

I have thought and thought and prayed and prayed some more on this. I really appreciate the input. I had been praying for some signs from God a clear signal that this diet is what he needed. I have my answer. I cannot continue to purposely gluten him for the purpose of getting official approval. The thought is crazy. I think his levels likely wouldn't be picked up on the blood tests and both dh are opposed to the biopsy. I just have peace now that this is the answer I was looking for and wanting. I am starting today to document this journey w/ pics and his height and weight. I will be journalling his mood and behavior, sleep etc. I feel resolve today. I feel sad today as well though. I am grieving, but we will make this.

[ravenwoodglass]

I have thought and thought and prayed and prayed some more on this. I really appreciate the input. I had been praying for some signs from God a clear signal that this diet is what he needed. I have my answer. I cannot continue to purposely gluten him for the purpose of getting official approval. The thought is crazy. I think his levels likely wouldn't be picked up on the blood tests and both dh are opposed to the biopsy. I just have peace now that this is the answer I was looking for and wanting. I am starting today to document this journey w/ pics and his height and weight. I will be journalling his mood and behavior, sleep etc. I feel resolve today. I feel sad today as well though. I am grieving, but we will make this.

You will make it. Do know that what you are feeling is something a lot of us have gone through. As you already know you have found one of the best places for info and support. If you need to vent please do, you can do it safely here. I hope it is not long before the positive effects of being gluten free puts a light in your childs eyes that you may not have seen in a while. The difference being gluten-free can make when the diet is needed is sometimes astounding.