Confused

[aili]

recently my daughter had a blood allergy test done that came back showing an IgG sensitivity to gluten. Do i need to go further in getting her diagnosed for celiacs? i'm putting her on a gluten-free diet anyway. I'm wondering what the benefits are for diagnosis. And if i did get her tested, is there a method that doesn't involve drawing blood or a biopsy?

She is 3.5 and very small for her age, falling off the charts from time to time. She has frequent loose and pale stools, severe eczema, and reflux. She also shows signs of CAPD and SID. Last month i put her on a CF/gluten-free sugar free diet and she did better. She actually experienced some rare pain-free naps. But these were only followed by days where her symptoms would return. It was very frustrating.

i'm not sure really what my question is. Does an IgG positive result for gluten mean anything? Where should i go from here? She was gluten-free for two weeks and i noticed improvement. However i took her off the diet because i thought that it was milk that was the problem. One week of bread and cakes and the change was dramatic. I put her back on gluten-free diet the same week her test results came in. That was last week. Her eczema is not abating and she still has diarhea. I've now got her on a CF/gluten-free/SF (positive for soy too) and Fructose free diet. (I think she may have a fructose intolerance too, because she reacts so badly to sugar and fruit.) How long do you think i need to wait to see improvement? this is so hard.

[Guest nini]

hang in there, it's hard to see your little one in so much pain, I can't give you an exact time frame on how long before her symptoms improve, It sounds like she has way more issues than just gluten. But then so do a lot of us. Just keep doing what you are doing, and even if she doesn't improve 100% right away, at least you aren't putting more toxic gluten into her little body. That alone will help her get better.

[stef-the-kicking-cuty]

Hello aili,

WELCOME to our message board.

Yes, there are a few more possibilities to figure out what the culprit could be. But some doctors don't like these other possibilities. Nevertheless you can do this, if you want. There is another way to get tested for celiac and/or other food allergies. Go to www.enterolab.com, they make tests with the stool there. Some of us here did this test and were very satisfied. And the best thing (that's what I think actually) is, you don't have to have eaten gluten before the tests. So you don't destroy your body more than you already did, in case you have celiac. That means you can do the tests, even if you already began with a glutenfree diet.

The other thing, that helped a lot of us, is a food diary. You write date, time and what you ate down everyday. First you begin with something, that you can eat a couple of days, than you add another thing for a couple of days and so on. This can be pretty boring for a 3.5 year old, but I think, it's a good possibility to check out, what's wrong.

I hope your little one gets better and if you have any problems, you can always come to this board. You will always find help with people that understand.

Stef

[KaitiUSA]

It would be better to get a diagnosis so you know for sure she can not have any gluten. When you know it will damage her then it becomes more serious. If you would like to know for yourself I would go with the suggestion of Enterolab. They have gene, malabsorption, gluten sensitivity, and more testing. They do this testing through stool samples. The negative to this is it is not widely accepted in the medical community but it is a great test in my opinion and not invasive. I was diagnosed through blood tests and did not need a biopsy because of my results.

Many celiacs have problems with milk at first because of damage done to the intestines. Usually this gets better when you go on the gluten free diet. I know I was lactose intolerant on and off my whole life until I went gluten free.

Some people just have a problem with milk(not related to celiac..they just can't handle it)

The improvement times vary from person to person...took me 3 months to feel alot better then a few more months to get back to normal but there was steady progress along the way.

Hang in there...good luck

[tarnalberry]

If the blood test doesn't convince you (or your doctor IF (and only if) you feel the need for him/her to be convinced), then do the biopsy now, before going gluten-free. (You'll need to have her on gluten for ~3 months before the biopsy.) They do biopsies on children all the time, and virtually all the stories I've heard of young childern (younger/smaller than yours) having them have been fine. (The biggest complaint I saw was fighting coming out of the anesthetic.)

But if you really don't want to do it and don't need that portion of the diagnosis for your peace of mind, then try the diet - STRICTLY - for a month, and see if you see any significant improvement. You're not looking for a resolution of all symptoms in a month - it may well take longer - but you're looking to see significant improvement. Exactly what that is... it's a subjective thing, you've got to rely on your own knowledge of your child for that one.

Remember that the dietary challenge IS a positive test in and of itself.

Good luck!

[aili]

thank you all for replying! i didn't realize that the enterolab's stool test doesn't require a gluten laden diet. that's perfect! i absolutely cannot do another blood test. It took 4 adults to physically pin her down to the bed (she's barely 11kg) and 30 minutes. She screamed so violently she got bruises under her eyes. It took me two days to recover.

we did get another stool test done (Open Original Shared Link) so i'll wait to get the results back from that one first to see if it leads anywhere. The waiting is hard, but i guess we are doing the best we can with the gluten-free diet anyway.

I have absolultely no problem with a gluten-free diet and i'm going on it with her. dd is very good too. she was raised vegetarian (eats milk and eggs) so understands when she can't have something. We live off a mostly chinese diet of rice and stir-fried veggies anyway. The dx would be mostly for friends and family (including her father) who believe her problems are either behavioural or from not eating meat. I've also sensed from some people that they equate gluten-free/CF/SF diet with child abuse. i think the diet may be harder on me than her.

[tarnalberry]

I hate to even feel the need to suggest this, but I'm going to anyway -

If you already have people trying to tell you that the gluten-free/CF/SF (and vegetarian) diet is child abuse, PLEASE keep a meticulous food diary for her. Every food, every vitamin, record it. Food diaries are useful for us to identify other food intolerances, but in your case, if you're ever worried that someone would call CPS on you for the diet, you'll want to have pre-existing evidence of the well-roundedness of her diet.

(There was a couple, apparently, who follow a raw food diet (vegan raw, not meat eating raw), who had their kids taken away from them, at least in part, because of the diet. I don't know the whole story, but I know that the diet was a part of the issue. (Those of you who watch House caught them reflecting that issue in a recent episode... I thought that was interesting.))

If nothing else, the food diary (I use fitday.com, just because it's easy) will make it trivial to prove that she's getting the fat/protein/carbs/fiber/vitamins/minerals that she needs.

There's also at least one vegetarian Yahoo group that might be able to help if you need additional ideas.

[aili]

wow. i have been keeping a written log of food, activities, and responses. i just checked out the online diary at fitness.com and i didn't realize i could be doing all that. what a huge help. thank you! i don't think i will need to prove it to anyone (people aren't really that interested, kwim?) but it is useful to ease my own mind.

[tarnalberry]

I hope you never need it! :-)

[mistyfog]

Hi aili,

My son's story is similar in the allergy testing part... I am still trying to figure out this connection!

My 10 yo son has had a bad rash on forearms and lower legs which comes and goes, and is intensely itchy. I finally got him to an allergist, who was open to the possibility of delayed food allergies (IgG mediated, like the York testing). They couldn't do skin testing since his arms were so rashy, so all was done via work. He had no reactions on IgE allergies (not even dust!) - but several on IgG testing.

The worst were gluten, wheat, barley, malt and rye! all were over 3+ and the gluten was very high. I asked the allergist to run the celiac panel - I had never even CONSIDERED that my son might have celiac before this! The allergist didn't appear to be concerned ... My doctor (Nurse/pract) was also non-plussed - you just have to follow the diet...she would not prescribe Dapsone (too harsh for children) they said. No need to see specialists!

Well the celiac panel came back with IgG and IgA AGA (gliaden and gluten) both positive and tTg also positive == almost certainly celiac disease. We now have an appt with a GI doctor at Children's in Boston. I also sent off a sample to Enterolab for testing and gene analysis.

For us, I absolutely want to get a definitive diagnosis on this, before committing my son to a lifetime of gluten--free living... but also, if he needs accomodations sometime in the future (i.e. school's often require diagnosis to provide special services), we'll know for sure. One last consideration for my son, aside from the rash (which is probably DH, but not confirmed), he has no intestinal symptoms right now. I think he (and I) may need "proof" that this condition is causing internal damage, to get the incentive to be absolutely gluten-free.

I know this is alot of info, but my other consideration is for my family. Since my son is tested positive for celiac, we will all get tested. When looking at the family tree, there is ADHD (alot), thyroid, diabetes, lactose intolerance, digestive issues, intestinal cancer, schizophrenia - but no diagnosed celiacs. Maybe we can prevent some future problems.

I still don't know what the connection is btwn the allergy IgG gluten test and the celiac IgG AGA tests... I think they are related, but I'm not sure how.

Anyhow, the Enterolab sounds like a good choice for you at present. I certainly understand not wanting to keep your daughter on gluten when she is feeling poorly - especially if you think it is helping!

Best,

misty