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New With ?'s

skyengabbie

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skyengabbie Newbie
skyengabbie
Posted

Hi everyone, I am just trying to find out more info. about Celiac Disease. I recently started seeing an allergist for allergies and was surprised to find out the abdunance of food allergies I have, including Wheat. For several years now I have suffered from what I thought was just IBS and now I am beginning to wonder about Celiac Disease?? Especially considering my infant daughter has had sevreal medical issues and no one has been able to give us an exact diagnosis?? Okay so now that I have given a brief history(sorry about the length) My ? is, shoud I be tested for Celiac disease given the Wheat allergy?? I am seeing the allergist again in a week and am not sure if I will sound absurd asking for him to test me. Thanks in advance for any advice, help or knowledge you can give me.

Laura

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Lisa Mentor
Lisa
Posted

Welcome aboard.....What are your symptoms. That will be helpful.

skyengabbie Newbie
skyengabbie
Posted
  • Author

Thanks for your reply. I have IBS, strange body aches that I have had since I was a kid(I have been xrayed, had MRI's and they can't find out the source of the pain--I just thought stress induced???) I have gas-sorry TMI:( At times I want to vomit, but then it fades, I just assume from hunger?? I get headaches that last, again just assumed sinus headaches as I have several environmental allergies. And fatigue, that is a big one, but with 3 kids I think anyone would be tired-LOL

Recently I went to the allergist and had the scratch test and found out I had a strong reaction to: rice, peas, wheat, soy, greenbeans, peanuts, almonds, and garlic.. It was quite a list!!! I just wasn't sure if I should worry about being tested considering the wheat allergy or if perhaps, I just had a false positive??

Thanks for your input, i really appreciate it

Lisa Mentor
Lisa
Posted

I am probably not to best qualified to advise. There are others here that are more experienced. Some people can have a wheat sensitivity, where others can have an intollerance of wheat and glutens. An intollerance, as in wheat and glutens are toxic to your body and therefore..Celiac Disease.

It appears that you have alot of things that you need to stay away from. Fatigue is classic for celiac disease as it was for me, not to say that an allergy could not creat the same symptoms.

Have you tried to be gluten free. If you have your testing, if you choose will be effected by the diet and yes, will show a false possitive, or negative for celiac disease.

I was digonosed with IBS for 27 years and because of a period of high stress the celiac disease kicked in. If I ate lunch, a half hour later I saw my lunch with 1/2 of my stomach acid in the bathroom. I had great fatigue, malaise,bathroom issues, and severe malnurishment due to malabsorbtion, vitamine defencies.

I had an endoscopy exams with biopsy which indicated flattening of the villi (to what degree I am not sure of). I have tried to be gluten-free for about 3-4 months and I am just now beginning to hold in my food intake.

If you choose to be tested, make sure that you remain on a Gluten diet. There are blood tests that can be done as well the endoscopy test, which is the "gold standard" to check for Celiac Disease. It is common that this disease/disorder can be carried by genes, which may effect your children.

I hope this will be helpful to you and I am sure that others will post in. Many are more knowlegeable than myself.

Please read as much as you can from the posts here. It truely has been a God-send to me and I have learned an increadable amount of information which has made it so much easier for me to change my life and perhaps save it.

We are all here to help each other.

Lisa B.

skyengabbie Newbie
skyengabbie
Posted
  • Author

Thanks you so much for your reply Lisa:)I haven't tried a gluten free diet yet as I just found out the lengthy list of allergies within the last week. If you have a wheat allergy, should you automatically be tested for Celiac Disease?? Sorry for all the ?'s, I just am trying to be as well informed as possible since I know that my diet will be changing dramatically within the coming weeks due to all the possible allergies I have. Thanks again for all your help. I am going to continue to read this board and gain more knowledge.

Lisa Mentor
Lisa
Posted

I am not quite sure where to go with this. But if it were me, I would request from my doctor to do a full blood work up (they used to call it an executive panel, don't know what the call it now.). It will show all your absorbsion/vitamine levels. Some may be low which will indicate a matter of interest by you doctor. All of this will lead him to other areas.

There also is a full blood work that can be done to test for celiac. I will ask others who are more familiar with this to post it. (As I will need it also to test my daughter)

Finding the source to feeling bad had been tough. But, if you have intention to be tested for celiac, please continue on your diet and do not go gulten free. To get a true reading continue to eat as you have normally do.

Others, please post in regarding the Celiac blood testing and the full panel needed to confirm regarding the blood work.

Take a deep breath and know that help is on the way. I wish you well in these next few weeks and please, always, feel free to post whatever questions you have and as many as you have.

We are all here to help each other. Welcome to the club. :):):)

Lisa B.

Rachel--24 Collaborator
Rachel--24
Posted
Recently I went to the allergist and had the scratch test and found out I had a strong reaction to: rice, peas, wheat, soy, greenbeans, peanuts, almonds, and garlic.. It was quite a list!!! I just wasn't sure if I should worry about being tested considering the wheat allergy or if perhaps, I just had a false positive??

<{POST_SNAPBACK}>

A wheat allergy wouldnt be the same as a gluten intolerance or celiac disease but you could have celiac and wheat allergy seperately. A scratch test or any allergy test cant diagnose celiac because they are two different kind of immune responses. Celiac is autoimmune and allergy is not. You should still test if you suspect a gluten intolerance. Just make sure they do the right tests (not allergy) and that you're still eating gluten.

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Ursa Major Collaborator
Ursa Major
Posted

It sounds like you may be lectin intolerant (and gluten is included in that). Follow this link, and you'll find that all the foods you're allergic to are on the list of foods containing lectin. Since I've stopped having all these foods I have felt so much better! And yes, it is a restrictive diet, but it's worth it.

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Nevadan Contributor
Nevadan
Posted
Recently I went to the allergist and had the scratch test and found out I had a strong reaction to: rice, peas, wheat, soy, greenbeans, peanuts, almonds, and garlic.. It was quite a list!!! I just wasn't sure if I should worry about being tested considering the wheat allergy or if perhaps, I just had a false positive??

Thanks for your input, i really appreciate it

<{POST_SNAPBACK}>

As Rachel has already said, the scratch tests do not test for gluten sensitivity/celiac disease. The body generates several types of antibodies in response to certain alergens. The scratch tests are for the IgE type antibody. GS/celiac disease are reflected in the IgA and/or IgG antibody types for gliadin (one of the gluten proteins) which are normally tested in the blood. Labs like Enterolab test for IgA in a stool specimen which they claim is more sensitive than a blood test. It sounds like you would be wise to have tests specifically for celiac disease and/or gluten sensitivity. There is a complete celiac disease panel of tests in addition to antigliadin IgA or IgG that you should have done.

Another thing to consider is that people with celiac disease often have lots of IgE type allergies.

George

skyengabbie Newbie
skyengabbie
Posted
  • Author

Thank you all so much for your input :) I think I will call my GP and ask that I have some more specific blood panels done. I know that a wheat allergy and Celiac Disease can be 2 different conditions. I just would like to rule out Celiac Disease considering my 16 month old and her health issues, which 2 Infectious Disease docs, a Urologist, and Ped. have been unable to diagnose. If it turns out, I have Celiac Disease I will definitely be having her tested as well.

Again, I thank you all for your valuable input, you have taught me so much already :)

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      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

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    • trents
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    • MTAC
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      By MTAC · Posted

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    • trents
      New diagnosis for 3 year old. Help!

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      I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having celiac disease and NCGS (Non Celiac Gluten Sensitivity). Although, it is often the case that once you have been gluten free for a significant period, returning to gluten brings more violent reactions. Immunoglobulin A, Qn, Serum is not a test for celiac disease for celiac per se but is a test for IGA deficiency. If someone is IGA deficient, IGA test scores will be artificially low and cannot be trusted. Your daughter is not IGA deficient. Yes, the EMA doesn't get a score apart from being just positive or negative. Unless your daughter is a super sensitive celiac, the biggest challenges will not be keeping her safe in the home but rather away from home. Eating out is the biggest challenge to celiacs because you have not much control over how food is handled back in the kitchen. You can order naturally free gluten free foods but it may be cooked in pots and pans and on grills that are also being used for wheated things. This may be helpful, though some suggest measures in this article may be overkill unless you are super sensitive:   
    • lizzie42
      New diagnosis for 3 year old. Help!

      By lizzie42 · Posted

      Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first!    Once they've been gluten free for awhile is it obvious when they get exposed on accident? She's improved a lot in the last few weeks even on gluten since doubling her iron dose. Her ferritin has come up so I assume that's why. But she still has the huge meltdowns some days and it makes sense now. 
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