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    Do you have questions about celiac disease or the gluten-free diet?

SuperBeck

Let The Tests Begin: What To Ask For Specifically

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Hi, My DDs are about to go thru allergy testing with an allergist on Thursday.

My 4 yo gets hives on her stomach at least once a month, and has a rash on the back of her arms all the time, EXCEPT-- right now, of course. (Rats!!!! I was SO hoping the allergist would see these blisters with his own eyes!) She alternates b/t slight constipation and D. She was in 95% for height and weight for first year of her precious life, but now has dropped to 5th, and has gained about 1 lb since last July. She often gets black rings under her eyes and a very bloated tummy.

My 3 yo had reflux pretty badly when a newborn. Sometimes she throws up now, if she coughs. She has had hives a few times, but not constant. She went from 90% percentile and dropped off the charts like -5%. She is now 3 1/2 and has gained 4 lbs in 1 1/2 years and is just now in size 2 clothes. She has very large stool with bleeding and a very bloated tummy.

They both would live on cheese and milk if I let them... but they also eat fruit and veg and whole wheat pasta, crackers and breads ... little processed stuff.

I have a few questions to throw out to you awesomely knowledgeable people ....

Is an allergist the right person to DX these complaints?

Can you please tell me the specific antibody tests we need? I believe they are going to do the brush/back test for food/airborne allergies. Are there any other blood tests I should request other than IgA deficiency and celiac disease panel? (I'd like to ask for anemia, but this is an allergist ... can they do that?)

Many thanks

>|< SuperBeck

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I didn't know that allergists do celiac testing, are you sure about that? celiac disease is not an allergy, and won't show up on any skin tests. In fact, it is unlikely even wheat will show up (even though sometimes it does).

Your daughter both sound an awful lot like they have celiac disease. All their symptoms are common ones. Who they REALLY need to see is a pediatric gastroentorologist!

I don't know what the tests should be, but I am sure somebody else will give you all that information.

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I agree with Ursula. The allergist will not be able to help with all of the symptoms you listed. I just went to the allergist a few weeks back and mentioned the Celiac and he didn't really have much to say about it.

Here are the panel of tests you should make sure are run:

Anti-gliadin IgA (AGA IgA)

Anti-gliadin IgG (AGA IgG)

Anti-Tissue Transglutaminase IgA (TTG)

Anti-endomysial antibodies (EMA)

Total Serum IgA

Good luck and I hope your little ones get to feeling better soon!

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When reading those symptoms I was thinking Dairy sounded highly suspect, and then I saw that they eat a lot of dairy! EEK!!!

The allergist will test for an allergic response /histamine respone on the skin level. This will not show if the reaction is internal with acid reflux, Celiac, or a slew of other symptoms. It will ONLY show the reactions that result in swelling and or hives etc.

What we opted to do was an ImmunoLab blood antibody test. Now, an allergist will likely scoff at blood antibody testing, but what that test does is shows how your blood responds to different foods that are introduced to it. I would suspect dairy being a culprit for your little ones.

When I was a child I had bloated gut, chronic acid reflux, diagnosed ulcer, dark eye circles, joint pain etc. I had a dairy intollerance and when I figured that out (on my own...the doctors never thought to try food elimination. . . they just gave me more and more meds :huh: ) those symptoms went away.

I had chronic rashing on my elbows and as I aged, rashes up and down my legs grew worse and worse to the point of bleeding. I took gluten out of my diet and the rashes have all stopped for the first time in my life.

So, while I have been to allergists and doctors galore, no one ever tested or even looked at the foods I was eating. And the skin scratch test would not have showed my dairy and gluten intollerance. So, while it can help you find a life threatening allergey, it is not likely to help with what is causing the bloated gut and acid reflux.

I would recommend elimination diet, enzymes, or immunolab blood antibody testing. They have a food panel and they can also test for Candida and Celiac as well as metals and molds.

I know a handful of people who got this testing covered by their insurance, but our own doctors all laughed at me and told me it was a joke. These are the same doctors who let my little girl go on with chronic diarrhea for 2 years while her autoimmune system started breaking down, though, so I can't put much stock into them for help in that department. You'll have to be resolved to pursue the diet issue even if the medical team does not. They are not trainsed specifically in this area and they will not likely lead you in the right direction when it comes to food intollerances. You'll have to steer the ship!

:)

If it helps, my own daughter has recovered from an autism diagnosis as well as chronic diarrhea through dietary changes with help of ImmunoLab and then the Specific Carbohydrate Diet.

Good luck!!!

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I didn't know that allergists do celiac testing, are you sure about that? celiac disease is not an allergy, and won't show up on any skin tests. In fact, it is unlikely even wheat will show up (even though sometimes it does).

Your daughter both sound an awful lot like they have celiac disease. All their symptoms are common ones. Who they REALLY need to see is a pediatric gastroentorologist!

I don't know what the tests should be, but I am sure somebody else will give you all that information.

Believe it or not, is was my son's allergist who ordered the Celiac panel and other labs after I had discussed with him the gi issues he's had in conjunction with the food allergies..which is obviously why we were there in the first place. I figured I'd throw out the gi symptoms while we were chatting. He was the one who point blank asked if Zachary had ever been screened for Celiac. The allergist...can you believe it?? :huh: The jack-ass pediatric GI (who BTW was the head of the peds gi department) told us our son was "just fine".

I'd discuss the symptoms your daughter is having with your ped and a ped gi. Don't be surprised if they dismiss you and look at you like you're out of your mind. The allergist will do the scratch test and can order a RAST panel which is blood work that will test for a whole bunch of stuff (foods, airborne allergies, etc.)

--Kristy

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Thank you all for your replies. RATS!!!!! I had a suspicion an allergist wouldn't be the best person. I had asked the girls' pediatrician before making the allergist appt, and she (and the allergist receptionist) said they do blood testing for celiac the day of the scratch test.

The thing is, the girls get hives, so I was hoping to find out if they were "allergy" derived. I understand celiac disease is an autoimmune response NOT an allergy. I didn't know about the dairy thing.

Oh well, onward and upward!!! Just another doctor to add to our growing list. Hopefully he'll at least run the celiac disease tests, or perhaps validate that their tummies are really swollen.

How can I explain that ALL of those tests need to be done, instead of the JUST one test he may want to do instead?

>|< SuperBeck

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Thanks Kristy! Well, I won't rule the allergist completely out then. Is RAST standard, or do I need to ask for that too?

My DDs' doc ALREADY looks at me like I'm neurotic over my DDs' health. (So does my entire family,actually!) I'll keep on keeping on!

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Thanks Kristy! Well, I won't rule the allergist completely out then. Is RAST standard, or do I need to ask for that too?

My DDs' doc ALREADY looks at me like I'm neurotic over my DDs' health. (So does my entire family,actually!) I'll keep on keeping on!

It does depend on the allergist. They can order bloodwork just like any other doctor, including a celiac panel. It just depends on whether or not the allergist thinks your nuts :blink:

It also depends on whether or not your allergist even deals in food allergies - many allergists don't, they only deal with environmental "here's a zyrtec, where's my check" allergies.

If you get a good one (in my case my allergist is a fossil who still uses old practices for exams and is AWESOME) then they are interested in systemic health. Technically, allergists should also be immunologists, but many forget or ignore that...

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Thanks Kristy! Well, I won't rule the allergist completely out then. Is RAST standard, or do I need to ask for that too?

My DDs' doc ALREADY looks at me like I'm neurotic over my DDs' health. (So does my entire family,actually!) I'll keep on keeping on!

The allergist being the one to address Celiac and order the labs is highly atypical! You could've knocked me over with a feather!! :) Regarding RAST testing...I don't believe it's something they automatically order. My son was allergy tested at 1 year old then again at 3 years old. The allergist didn't order the RAST labs until he was there a couple months ago (when he turned 3). My son has eczema and mild asthma, so I had asked for him to be screened again prior to starting pre- school. This time he was positive for a couple more food allergies, via the scratch test, in addition to starting preschool, so I'm sure that was the catalyst to the RAST testing.

If you have the full Celiac panel completed (5 labs in all) PLEASE confirm with the lab tech that they took the blood for all of the labs. The lab tech screwed up my son's Celiac panel and "forgot" to draw the blood for two of the labs. :angry: Unfortunately, we didn't find this out until he was on a gluten-free diet for a full month.

Some doctors take this "mightier than thou" attitude with parents. Where as if they just got off their high-horse and LISTENED they might learn something from us...we certainly know our children better than they do! It's very frustrating when you KNOW something is wrong with your child and the medical community isn't listening. My ped, fortunately, has been very supportive of following the gluten-free diet and has agreed to label this issue as a gluten intolerance at the moment. Without positive labs and a biopsy the vast majority of doctors aren't willing to give a Dx of Celiac--even with a positive dietary response.

--Kristy

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I just wanted to point out that gluten CAN cause hives, as it is one of my symptoms when glutened. But I also agree that it sounds like they're gluten and dairy intolerant. I hope you'll get it all figured out!

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I just wanted to point out that gluten CAN cause hives, as it is one of my symptoms when glutened. But I also agree that it sounds like they're gluten and dairy intolerant. I hope you'll get it all figured out!

Hi Team,

Just wanted to let you know my 3 yo was not allergic to any food pricks today. They tested about 30 things including wheat and milk. (I know that casein and gluten intolerance wouldn't show in an allergy test.) The allergist wrote up the Celiac test for us, which we will do tomorrow on both girls after my 4 yo's tests. He said we should see a ped gastro, like y'all were suggesting, but he seemed familiar with Celiac and concerned enough to do the tests.

Question: We are going to LabCorp for the draw:

Profile Includes Quantitative results for Antibodies to:

Gliaden, IgA

Gliaden, IgG

Reticulin, IgA

Reticulin, IgG

Tissue Transglutaminase IgA

Are these right? I noticed a few are different than Wolfie's earlier post, but there are 5.

SuperBeck

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Guest nini

my daughter also gets hives when exposed to gluten... all over her face arms and body... she was dx'ed with gluten intolerance by positive dietary response by her pediatrician,after the pediatric gastroenterologist dismissed me and said that she just had IBS... if you have an allergist that knows about celiac and will order the complete celiac panel, he very well could be a keeper... don't give up on him yet! But if the tests turn up negative, you can still try the diet and see if it helps. If it doesn't you can try eliminating just dairy... or both...

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Awesome!! I'm so happy to hear that your allergist ordered the labs. :D:D My allergist looks at the whole picture, too. Not just the food allergies. I agree with Nini; if the labs come back negative you should definitely try a gluten-free diet and see how it goes. You may have to eliminate both gluten and dairy at some point until she starts to feel better, but I would start with gluten first. If there is any type of issue with gluten you'll see some level of improvement/change fairly quickly. A lot of moms who post here saw improvement/change in just a couple of days...I'm one of those moms!

--Kristy

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Superback--Sounds great! That allergist sounds like a keeper. I was diagnosed by a gastro., but I see an allergist who is also interested in treating the whole person. He did the allergy scratch tests on me, and guided me through an elimination diet--he even explained how my reflux was all tied in with my breathing, and digestion. That reflux is all but gone now, thanks to identifying and elininating my food intolerances. My gastro. did not even want to talk about the possibility of the intolerances. If I had listened to him, I would still be getting worse instead of improving. My allergist himself has food intolerances (and has a Celiac aunt), so right off the bat, he was easy to talk to. Good luck with the blood testing--hopefully the results will be clear-cut. If not, go with the symptoms and try the gluten-free diet--it's healthy, and worth a try. :)

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