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Enterolab Tests In

sore joints

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sore joints Apprentice
sore joints
Posted

Good morning everyone!

I just received my test results back and I could use some help understanding all of this. My stool test result from Enterolab gave a Fecal Antigliadin IgA result of 12 and it was recommended that I go off of gluten permanently and have my family members tested. First of all, does this mean that I am Celiac or do I need to have an intestinal biopsy to determine this? I have a 20 mth old daughter (who is at the bottom of the growth chart but no others symptoms) and a 3 yr old son (w/ no symptoms). Should I have them tested and if so what test/s should I order?

I also had some allergy/food sensitivity testing (blood testing) done through Rocky Mountain Analytical and the tests came back showing a high sensitivity to gluten, wheat, rye, barley, oats as well as most milk products. Should Celiacs also cut milk products out of their diet? Can milk products do the same damage that gluten can? I don't have the typical systems and my symptoms are very mild so I only want to cut out foods that are going to do some damage.

Any insight would be appreciated. Thanks!

Alison

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Guest nini
Guest nini
Posted

you are obviously gluten intolerant. Celiac is only one of the many manifestations of gluten intolerance, so it doesn't really matter what you call it, you still have to be on the gluten free diet. Yes, some of us are also unable to digest dairy as well. Others have even more intolerances. You do not need any further testing, just go on the gluten free diet, eliminate dairy initially then after you've been gluten-free/ dairy free for about six months, reintroduce dairy and see if you notice any symptoms. Gluten intolerance can affect so many different aspects of our health, not just digestive, so pay attention to any neurological manifestations, respiratory, mental, as well as sore muscles and joints and fatigue.

you can have Enterolab test your children and other first degree relatives as well, or simply put them on the diet. You do not need a dx. or a Dr.s permission to be on the gluten-free diet, and if your family becomes healthier as a result of it, that's great.

Many of us have had medical Dr.s telling us for years there is nothing wrong with us and we can't possibly have this "rare" disease, but by going on the diet, our health has improved so much that there is no doubt that gluten was the culprit. I was fortunate do be dx'ed by a Dr. that recognized Celiac, but I didn't have a biopsy, and neither did my daughter, but our health is so much better gluten-free and we will never ever willingly eat gluten ever again.

AndreaB Contributor
AndreaB
Posted

If you can swing the money I'd recommend getting the children tested by enterolab. I had it done for my family and found that 3 out of 4 of us (infant too young) were intolerant to gluten. I also had the other tests done, but we ate a lot of soy and wanted to know about that. The thing I like about enterolab is the noninvasivness and that it is more accurate sooner.

It was interesting to see what gene combination the children got from us. We will have the baby tested sometime next year, although he was crabby the week we had him on oatmeal. The rest of us had no obvious symptoms but now have tummy and bowel distress until it clears our system.

capecodda Rookie
capecodda
Posted
you are obviously gluten intolerant. Celiac is only one of the many manifestations of gluten intolerance, so it doesn't really matter what you call it, you still have to be on the gluten free diet. Yes, some of us are also unable to digest dairy as well. Others have even more intolerances. You do not need any further testing, just go on the gluten free diet, eliminate dairy initially then after you've been gluten-free/ dairy free for about six months, reintroduce dairy and see if you notice any symptoms. Gluten intolerance can affect so many different aspects of our health, not just digestive, so pay attention to any neurological manifestations, respiratory, mental, as well as sore muscles and joints and fatigue.

you can have Enterolab test your children and other first degree relatives as well, or simply put them on the diet. You do not need a dx. or a Dr.s permission to be on the gluten-free diet, and if your family becomes healthier as a result of it, that's great.

Many of us have had medical Dr.s telling us for years there is nothing wrong with us and we can't possibly have this "rare" disease, but by going on the diet, our health has improved so much that there is no doubt that gluten was the culprit. I was fortunate do be dx'ed by a Dr. that recognized Celiac, but I didn't have a biopsy, and neither did my daughter, but our health is so much better gluten-free and we will never ever willingly eat gluten ever again.

"Gluten intolerance can affect so many different aspects of our health, not just digestive, so pay attention to any neurological manifestations, respiratory, mental, as well as sore muscles and joints and fatigue. ""

Oh boy...are these neurological problems reversable with gluten free?? I most definitely have felt a sense of limited ability for some time to process too much info..my mind feels as if it has been increasingly tolerant of simplicity only and basically shuts off with too much info.. I suppose it could be stress related too, but it has been disturbing. I fell as if I am embarking on early senility.

Guest nini
Guest nini
Posted

in a lot of cases, if it's caught early enough, the neurological effects can be mostly reversed with the diet. Give it time though.

sore joints Apprentice
sore joints
Posted
  • Author

Hi everyone!

Anyone know how old kids should be before they are tested by Enterolab? Is 20 mths too young?

Alison

AndreaB Contributor
AndreaB
Posted
Hi everyone!

Anyone know how old kids should be before they are tested by Enterolab? Is 20 mths too young?

Alison

Alison,

20 months is plenty old enough. Then need a 1/2 cup sample so the sample would need to be frozen until at least a half cup was collected. We wrapped our containers in foil when we put them in the freezer to keep from contaminating anything else.

as well as most milk products. Should Celiacs also cut milk products out of their diet? Can milk products do the same damage that gluten can? I don't have the typical systems and my symptoms are very mild so I only want to cut out foods that are going to do some damage.

Any insight would be appreciated. Thanks!

Alison

I would cut out the milk products that you are allergic to for at least 2 months preferrably longer. Then add one of the products back in and note any reaction....sneezing, congestion (those are allergic responses too). I am mildly dairy allergic and have just decided to totally cut it out, as hard as that is. We were mostly dairy free already.

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dawnd Newbie
dawnd
Posted

I've been reading your posts and you all seem to understand gluten intolerance and other allergies very well. I need some advice for my 2 1/2 son. He has Down syndrome and his first 18 months he always had a rash, seemed to zone out a lot and was not progressing as well as our other friend with Downs. I took him off Gluten and the next day his rashes cleared and he started crawling (we had been working on that for 6 months). Two months later I took him off casen and he showed some more improvement although not as drastic. We had his blood tested 4 months after being off gluten and 2 months after off casen with the following results: Celiac AB Profile Antigliadin Abs, IgA = 2 and IgG = 10. IgE for food allergens (including milk and wheat) less than 0.35. According to many of the posts I have read, if he has Celiac I have to watch his playdough, finger paints, soap and so many things that would make things even harder than he already has it with Downs. I am to the point that I need to know as definitively as possible about the gluten and casen. His GI doc said we can do the upper endoscopy for biopsy to know for sure. IThat means putting him back on gluten. I am afraid to do that - he is in school and it would break my heart to see him regress. I have also been reading about enterolab's stool tests. I don't want him to be on this diet if he doesn't have to be. Please, if you have any insight I would appreicate your time and knowledge. I want to make things easier for him if I can. Maybe one of the allergies were coincidence (maybe that's just wishful thinking, but I need to know for him).

AndreaB Contributor
AndreaB
Posted

Dawn,

I would highly recommend enterolabs full gluten panel ($369). It includes gene testing, IgA antibodies, ttg, malabsorption and did include dairy back in May when I had it done.

That will tell you whether he has an intolerance to dairy. I would keep him gluten free for sure as I have read that gluten is associated with down's and there should be improvement (which you have noted). I'm not sure about the dairy, unless down's protocol is similar to autistic protocol.

Enterolab testing will give you the numbers and is much more sensitive than the blood tests.

Open Original Shared Link

As far as I know, Crayola finger paints are ok. Oops, just checked what I have....it's crayola tempera poster paint. I had assumed it could also be used for finger painting but I don't know. Go to their website and check there stuff out. Most of it is ok if I remember correctly. You can also call them at 1-800-crayola from 9-4 est on the weekdays.

dawnd Newbie
dawnd
Posted

Andrea,

Thank you for your reply. I am so overwhelmed. I don't want things to be harder for Joe than they have to be...I wish I could just know for sure if he has to be off gluten/casen. It seems Enterolab is as definative as any other test. It's hard, as you know.

Sincerely, Dawn

AndreaB Contributor
AndreaB
Posted

Dawn,

Dietary restrictions are hard until we get used to them, yes. It will become second nature to you. Enterolab does offer just dairy too, depends on what you are looking for. You can go over their tests and packages and see what is best suited for your needs.

I pursued Enterolab after my infant son's eczema drove me to get allergy testing done on myself. Since I've gone gluten free (and soy free) his rash is gone. He has been behind my other two children developmentally but has picked up now. None of them are down or autistic, although if we had remained on gluten I'm sure some developmental delays would have been more prominent in my youngest. If he hadn't gotten eczema we would have been none the wiser. I've just read about autistic children and the wonderful response to the diet that they have. I had also recently run across down's children who have benefitted going gluten free.....maybe it was in Dangerous Grains list of diseases/illnesses associated with gluten.

My daughter had Henoch-Scholein Purpura and I'm really curious about whether they will ever find a relationship between that and celiac/gluten sensitivity since HSP has juvinile RA, abdominal pain as part of that disease/illness. The nephrologist she sees didn't dismiss the possibility. I don't think that's been linked yet though. HSP was first diagnosed in the 1800's I think.

I went off on a tangent. Dangerous Grains lists a lot of things associated with gluten consumption. Doesn't mean that gluten is the only cause of problems....just that it's involved in so much.

dawnd Newbie
dawnd
Posted

Andrea, Do you feel like you have a definative diagnosis from Enterolab? I just don't want to assume he has to be on this diet. He has been gluten free for a year - I want to know for sure if we have to continue this. Dawn

AndreaB Contributor
AndreaB
Posted

Dawn,

Yes, I feel the diagnosis is definitive. If Joe has been gluten free for a year, he may not have antibodies, but you'd get the gene's and dairy if you did the whole panel. It also depends on how bad he was. They say the antibodies stay in the intestines awhile. Also if he has had any cc situations then he would still register. Enterolab says to retest after a length of time to see if you have any hidden gluten getting in to the system still. We didn't have damage except for my oldest son. You can get just the dairy from them....I don't know how much it is....probably $99.

Look around their website, call or email and ask questions. They are super helpful. I do know that with Down syndrome he will need to be gluten free anyway (from the fact that gluten causes problems). Just depends on if you want something more to base your decision off of than the dietary response. I would definately get the dairy so you can see if it is an allergy that you can get the body to forget or if it is an intolerance. I am dairy allergic but not intolerant. I had everything done that enterolab offered after I had allergy testing.

If you have questions....put him back on gluten for a week or two and note if his behavior changes and if he gets the rashes again. If he develops the same symptoms than the decision would be to go off for life with or without enterolab testing. One year should be long enough to get the body to forget if he has an allergy. My infant son broke out with eczema which is what started us down this road. If you don't want him on gluten at all due to school then call or email enterolab and see what they say.

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