I Think My Dd Has Gluten Allergy

[momof7]

My daughter was always having a hard time gaining weight and she always stayed in the 10th percentile. She also was anemic on and off for the 1st 5 years. She is now 11 and is very anorexic looking even though she eats a ton.

For the past 2 years she has constantly comlained she feels sick. I have taken her to the ped. and he ran a BMP, checked her thyroid. When those didn't show anything the Dr said she it must be depression and sent her to a counselor. I know my child and I know something is wrong!

Anyway so I thought maby she has some food allergies because I started to notice the stomach pain was worse after eating. I took her off all gluten for 4 days and she felt great immediatly. She stopped complaining her stomach was sick and has more energy. Also on day 4 we were really busy because my other daughter had a b-ball game and we got home late so I made some quick spaghetti. Soon after my daugter was very sick and saying Mom I think your right! I am never eating that stuff again!

So I am thinking because she is feeling so much better eating gluten free she must have an allergy. Should I stick her back on a normal diet to get her tested or just continue on with the diet?

[momof7]

Anyone have any advice??

[jerseyangel]

It sounds to me like you did a gluten challange with her--and showed that she is at least intolerant to gluten.

It does not sound like a classic allergy(anaphalactic reaction), but possibly a delayed allergy--also known as an intolerance.

You could just keep her off gluten because she's obviously reacting to it. If you would like her to be tested for Celiac, she would need to go back to eating gluten for a few months at least so as not to skew the tests.

[confused]

If she has only been gluten free for 4 days, wouldnt the blood test still be kinda accurate, well that is if you can get her in asap. You could also test threw entrolab and see if she is reacting to gluten, you can be gluten free for up to an yr with their test.

paula

[momof7]

Thanks for your replies.

Jerseyangle, sorry for my incorrect terms. I guess I mean she may be intolerant. Is celiac and intolerant the same thing?

I was also wondering if Confused is correct that I could still get her tested even if she has been off gluten for a few days or do I really have to put her on regular food for 2 months first.

The independant lab is very expensive!

thanks

[Belinda Meeker]

Thanks for your replies.

Jerseyangle, sorry for my incorrect terms. I guess I mean she may be intolerant. Is celiac and intolerant the same thing?

I was also wondering if Confused is correct that I could still get her tested even if she has been off gluten for a few days or do I really have to put her on regular food for 2 months first.

The independant lab is very expensive!

thanks

Hi momof7, urs sounds just like ours did with my son, and believe me if u have already figured out she's doing great gluten-free then just stay that way for ever I wouldn't let her go thru what they have to in order to get a posative test result (not sounding mean -but u already have the answer)

My son was misserable on the gluten diet and now he's still skinny but not pale complected or tierd like he was on the gluten. You r one ot the luckier ones tho cuz she now knows what already makes her belly hurt and she will be more then not likely to cheat .

I also have it and my hubby too, we both had false negatives but now gluten-free we r doing great

Good Luck! It's not worth it to make her suffer any more, just keep the gluten-free diet from now on

Bea

[jerseyangel]

Thanks for your replies.

Jerseyangle, sorry for my incorrect terms. I guess I mean she may be intolerant. Is celiac and intolerant the same thing?

I was also wondering if Confused is correct that I could still get her tested even if she has been off gluten for a few days or do I really have to put her on regular food for 2 months first.

The independant lab is very expensive!

thanks

Don't apologize--it's all pretty confusing

Celiac and gluten intolerance (GI) differ in that technically in Celiac, the villi (lining of the small intestine) are damaged. The problem is that the tests are not always reliable and a person can have a "negative" biopsy but still have the disease. The biopsy can rule it in but not out.

The Celiac Blood panel, which tests for antibodies, requires the person to be ingesting gluten on a regular basis.

Since the villi begin to heal relatively quickly once gluten is eliminated (the symptoms, unfortunately don't always go away so quickly), even a week off gluten can cause the testing to be a false negative. In other words, you have to re-damage the villi in order to get an "official" diagnosis.

The treatment for both Celiac and GI are exactly the same--the gluten-free diet. It's up to you whether you want to put her through a period of eating gluten again, or just go with the results of your own diet challenge (which is a valid diagnostic tool in and of itself).

You'll get lots of opinions about this--mine is that you need to do what you feel is best for your child and your situation.

[nora-n]

Here in Europe we would definitely go and get an official diagnosis and he ahs to keep eating gluten until the endoscopy. Often one can get in real quick because of cancellations.

My DD2 got immediately better offf gluten like your daughter. She went back on gluten for the biopsies and knew she would get ill again ,but endured. Biopsies were negaive, but she got an official diagnosis anyway because of symptoms.

If diagnosed, they will provide you with counseling with specially trained dieticians, and many places in europe you get some kind of aid towards the increased expenses for gluten-free living.

And, it is good to have the initial biopsy for reference. Sometimes the patient has other issues too, and celiacs are more prone to certain cancers in the intestines. I even saw such a patient. She also had DH and a constant burning rash which means she wan not compliant or got cc.

Here in Europe we can get a home test for Ttg2- andtibodies which is very specific for celiac. Here we would run to the pharmacy and do the test, or get an appointment with the doctor to get the test done there as soon ans possible. The antibodies micht still be valid now (I guess so) because your daughter has only been off gluten for such a short time.

My daughter was negative for antibodies, and so are about 10% of celiacs.

nora

[momof7]

Well I just wanted to update. After months of being told my daughter was just depressed we switched pediatricians. I brought my daughter to the new ped. for the stomach flu and she commented on how thin my daughter was. I told her about how she felt sick everytime she ate foods like pasta, ect. The new ped. asked if my daughter was still eating wheat because the test she was going to do would be a waste if she wasn't. I was so happy finally someone was listening!!

Well I got a call today and her test was really high! I am not sure what test it was but it was a test for antibodies. So my daughter is getting refered to the GI doctor now. What will the GI Dr do? Do they do the biopsy? What all is needed for a dx?

It will not be easy if she has celiac but at least we will have an answer to why she is sick all the time and won't gain weight.

[hawaiimama]

She sounds like my DS although his antibodies were neg (but he had some so that alone makes me wonder). I can't believe you had to wait between dec of last year and now to get the blood test. Horrible. I hope you get an answer soon.

Did she resume eating wheat over that period?

[momof7]

She sounds like my DS although his antibodies were neg (but he had some so that alone makes me wonder). I can't believe you had to wait between dec of last year and now to get the blood test. Horrible. I hope you get an answer soon.

Did she resume eating wheat over that period?

Yes, I had her resume her normal diet. We had hoped her pediatrician would test her but he just gave us a referal to a phsyciatrist because the ped thought she was depressed. It is horible that if a Dr can't find out what is wrong you are automatically depressed!

What exactly does the antibody test mean if it is postive/ negative?