Wheat Allergy Vs. Celiac Diseases

[no-more-muffins]

My insurance wont cover enterolab...

I am going down the allergy road first, and maybe they can reorder the bloodwork for celiac and have me eating gluten prior to having it...

It just really makes me scratch my head that drs would tell you to eat gluten so your intestines would be destroyed just so they could tell you you are intolerant to gluten. If you know you are intolerant to gluten, doesnt' that "count" just as much as if you actually have "celiac". To me it is the same and the thought of making oneself sick for months just to prove what you already know seems really unnecessary. I wholeheartedly disagree with Dr.s on this point. If you want to eat gluten free, and it helps you feel better, who gives a crap whether you actually have villous atrophy (if they even find it.)They are telling you to do something dangerous and unhealthy to your body.

And my ins. doesn't cover enterolab either, BUT a test for gluten costs a hundred bucks. That is A LOT less than the co-insurance I paid for my endo, sigmoidoscope, consult with the GI, recovery in the hostpital, nursing care etc. etc. etc. I think this hundred dollars will tell me more than any of those tests did.

again, my 2 pennies.

[Fiddle-Faddle]

I totally agree with No More Muffins, and also think that you put your finger on it--your EGD and biopsy will pay for his expensive office and rude, ignorant staff.

If you pay out-of-pocket for Enterolab, the results will NOT be available to your doctor or your insurance company (unless you choose to give it to them)--which could be a good thing. Insurance companies (both health and life) use celiac disease as an excuse to deny coverage down the road (like if you are switching jobs and/or insurance companies): they say that you are ineligible for coverage because you have a pre-existing condition.

They don't give a flying fig that celiac is the easiest and cheapest disorder in the world to treat, and that treatment costs THEM nothing.

I would advise seeking more answers through Enterolab (which doesn't officially diagnose celiac disease, as they don't examine your villi, but they diagnose the hallmarks of celiac--malabsorption, and whether or not you are producing the celiac-related antibodies). If you have unresolved issues and/or further questions, you can always do a scope later, and it might be more informative than if you do it now.

If you do it later, after being gluten-free for an extended period of time, you can pretty much rule out that gluten is causing whatever damage might be found at that later date.

If you do it now, and they do find damage, gluten is the likely culprit--but if you have continued symptoms after a gluten-free diet, they'll still want to do another scope to see if you've healed, and then, if you haven't, they'll still be considering other possibilities. Or they'll tell you that you haven't been compliant enough with the diet, or something like that.

[curiousgeorge]

The biopsy was really nothing. I was lying on my left side (not back) and it was quick, painless, and I was totally out of it. They also said they have people who routinely come in for endoscopy and do it w/o drugs.

The thing is, your symptoms, fatigue, D, pain, are all celaic symptoms. Your seeing a GI so that is where he goes. The symptoms you have though, IMHO, point more to celiac than wheat allergy. I also believe, that in adults, celiac is far more likley than wheat allergy. You said you felt lousy for three days after eating wheat, that is far more celiac like than allergy. Allergy symptoms are usually fast and furious vs the long lingering symptoms of celiac. I, for example, had a minute bit of gluten a week ago and I still have the headache from it. My child, who has a nut allergy, took one bite of something and had hives all over her face w/in 30 seconds. I'm a wee bit confused as to why your seeing a GI if your so convinced its an allergy?

[DPAZ]

I totally agree with No More Muffins, and also think that you put your finger on it--your EGD and biopsy will pay for his expensive office and rude, ignorant staff.

If you pay out-of-pocket for Enterolab, the results will NOT be available to your doctor or your insurance company (unless you choose to give it to them)--which could be a good thing. Insurance companies (both health and life) use celiac disease as an excuse to deny coverage down the road (like if you are switching jobs and/or insurance companies): they say that you are ineligible for coverage because you have a pre-existing condition.

They don't give a flying fig that celiac is the easiest and cheapest disorder in the world to treat, and that treatment costs THEM nothing.

I would advise seeking more answers through Enterolab (which doesn't officially diagnose celiac disease, as they don't examine your villi, but they diagnose the hallmarks of celiac--malabsorption, and whether or not you are producing the celiac-related antibodies). If you have unresolved issues and/or further questions, you can always do a scope later, and it might be more informative than if you do it now.

If you do it later, after being gluten-free for an extended period of time, you can pretty much rule out that gluten is causing whatever damage might be found at that later date.

If you do it now, and they do find damage, gluten is the likely culprit--but if you have continued symptoms after a gluten-free diet, they'll still want to do another scope to see if you've healed, and then, if you haven't, they'll still be considering other possibilities. Or they'll tell you that you haven't been compliant enough with the diet, or something like that.

He said he will be looking for other things besides celiac and there could be other things such microcoliits or motility issues. I am having it done and I think a lot of docs do fluff up their work loads to make money, but I did interrogate him quite a bit. I have noticed a lot of docs have rude staffs. I can't spend time going to a lot of docs, nor will my insurance allow that, so I am going with this. I want to know. If it comes up as inconclusive, they won't get another scope or biopsy out of me, believe me.

[DPAZ]

The biopsy was really nothing. I was lying on my left side (not back) and it was quick, painless, and I was totally out of it. They also said they have people who routinely come in for endoscopy and do it w/o drugs.

The thing is, your symptoms, fatigue, D, pain, are all celaic symptoms. Your seeing a GI so that is where he goes. The symptoms you have though, IMHO, point more to celiac than wheat allergy. I also believe, that in adults, celiac is far more likley than wheat allergy. You said you felt lousy for three days after eating wheat, that is far more celiac like than allergy. Allergy symptoms are usually fast and furious vs the long lingering symptoms of celiac. I, for example, had a minute bit of gluten a week ago and I still have the headache from it. My child, who has a nut allergy, took one bite of something and had hives all over her face w/in 30 seconds. I'm a wee bit confused as to why your seeing a GI if your so convinced its an allergy?

I am seeing a gastroenterologist because my doctor sent me to one. For me, there was confusion with all of the symptoms. But I am going to go and get wheat allergy ruled out, because if the scope and biopsies are inconclusive, then I will know whether it is allergy or not.

The scopes and biopsies aren

[DPAZ]

I just found out today that my celiac bloodwork all came back negative.

The allergist appointment got cancelled, as the insurance company did not approve

The appointment.

When I called the insurance company to find out why, I found out they did not approve the scopes and biopsies for this coming week, so all of that is getting cancelled too.

So I am back to square one, will just eliminate wheat from my diet, as I know that does work.

Maybe they didn

[tarnalberry]

how did your dietary challenge with a non-wheat gluten source go?

[DPAZ]

how did your dietary challenge with a non-wheat gluten source go?

When I strictly avoided all grains, I felt great.

But according to the bloodwork, I am not a celiac.

He tested me when I was gluten-free, and when I asked him, he said that doesn

[tarnalberry]

I thought you said you were going to try a dietary challenge (where you avoid the food being challenged for a while, and then try it for a few days, and see what the results are). Specifically, a challenge to determine whether it's gluten intolerance or wheat allergy, so you would have to avoid rye or barley (not wheat, since you already know wheat bothers you) for a couple weeks, and then eat a fair amount of it for a few days. I was wondering how that went.

[DPAZ]

I thought you said you were going to try a dietary challenge (where you avoid the food being challenged for a while, and then try it for a few days, and see what the results are). Specifically, a challenge to determine whether it's gluten intolerance or wheat allergy, so you would have to avoid rye or barley (not wheat, since you already know wheat bothers you) for a couple weeks, and then eat a fair amount of it for a few days. I was wondering how that went.

The gastroenterologist said the blood tests are completely valid, and that I am not a celiac. I asked him again.

[lizard00]

The gastroenterologist said the blood tests are completely valid, and that I am not a celiac. I asked him again.

So, you don't think he's a good doctor (from your other posts), but you are willing to listen to him tell you that you are not celiac based on a test that is widely known to be inaccurate?

Did he offer you anything?

[DPAZ]

So, you don't think he's a good doctor (from your other posts), but you are willing to listen to him tell you that you are not celiac based on a test that is widely known to be inaccurate?

Did he offer you anything?

When you say "offer anything", do mean medications? No...he pretty much left it up to being scoped both ends to rule out cancer or any other problems. But they had never filed for pre-cert or authorization for my insurance, which the doctor's office has to do, not the patient, who has no codes, etc.

His medical assistant left me a voicemail pretty much ending contact with them because I told them my insurance would not cover this procedure.

I have since tried to contact this doctor's office and get my files. The guy at the front desk is very unusual. He refuses to help and get me to the proper person. I told him I wanted the office manager's extension, and he smugly said to me, "Oh, and you can tell her my name is Tom." Wow. He is the keeper of the keys, and you can't get past him if he doesn't want you to. You can bet I don't want anything more to do with these people and I am going to try to go to another doctor.

[tarnalberry]

The gastroenterologist said the blood tests are completely valid, and that I am not a celiac. I asked him again.

You will find no scientifically reliable reference that states that the blood tests for gluten intolerance are both 100% accurate and 100% specific. They are highly specific, but accuracy ranges with the suite of tests run (and analyzed in tandem), and generally do not get over 90%.

[Nadia2009]

DPAZ,

I can relate to what you are going through. I too have food allergies and maybe wheat allergy although sometimes I wonder if it is not celiac. My doctors decided my blood test is inconclusive but here on this forum, I learned I wasn't tested for the full celiac panel. From what I understand, doctors are not that familiar with celiac and gluten intolerance. Just like you, I know for sure that wheat makes me sick. I say wheat and not gluten because I am sure about the that one and most of the gluten on the shelves are from wheat.

Here is what I gathered so far about dairy and wheat allergies: the symptoms are more congested nose, sinus issues and breathing difficulties and I do have that. The common symptoms are fatigue, mood swings, feeling of depression...correct me everyone if I am wrong. I have very little digestive symptoms but I have respiratory and "brain" symptoms. I have asthma triggered by food and allergies (btw I have no tree allergies thanks God!) and I can't think normally, I have fatigue, ADD like symptoms and mood swings...at least this is how I was in the past winter. Since then, I am off gluten and I am working on my vit D deficiency.

We all feel at times frustrated with doctors. I wish mine sent me for the vili test as I would like a clear diagnostic. Also, I didn't want to avoid all grains that have gluten because of wheat but I now avoid them all to stay out of trouble. I am now seeing a naturopathic doctor and one new thing I learned is that I have high EOS in my blood results and he told me that could mean I am allergic to something...maybe people in this forum could tell me more about the high EOS (I am at the highest end).

I am also frustrated with the allergy testing. I cannot find a doctor who is doing food allergies and my doctor wants me to see one but he has no name to suggest. When I had my environment allergies done years ago because of breathing difficulties, they only found I had dust mite allergy but didn't test me for food. I was told it is another type of testing.

I am off gluten now but my respiratory symptoms have worsen and I am now thinking I might have dairy intolerance and the Naturopathic doctor thinks it could be an allergy to casein. But my "brain" symptoms are better, I feel less fatigue and less depressed but I am also on vacation, it is the summer and I am correcting my vit D deficiency the only deficiency that was detected. My doc doesn't think I have celiac based of my lack of deficiencies. And I would be really thrilled if I had no gluten intolerance (wishful thinking ) that it was all casein and my fatigue and "depression" were due to my low vit D as it is also known for that. But I am just in a state of confusion about my health allergies intolerances and it will probably take me more time to see some light.

I understand you don't want to settle for a celiac disease or gluten intolerance if you dont have them. So be patient and keep learning about your health, there is no doctor who is as interested in our own health as we are. Let me know if you learn anything about the difference of wheat allergy and celiac/gluten intolerance.

Wish you all the best and loads of patience

[DPAZ]

Nadia,

I have respiratory symptoms, always have...but I also have asthma, and whether

that is directly related is a mystery.

I got tired of the craziness with that doctor, and I might lose my health insurance, so knowing I can

[ravenwoodglass]

Nadia,

I have respiratory symptoms, always have...but I also have asthma, and whether

that is directly related is a mystery.

I got tired of the craziness with that doctor, and I might lose my health insurance, so knowing I can