Wheat Allergy Vs. Celiac Diseases

[DPAZ]

I have a lot of allergies.

I am allergic to dairy and shellfish, nickel, iodine, imaging contrast, trees, pollen, dust.

My diarrhea and gut pain have increased, so I eliminated all grains from my diet, because grains are grasses.

Everything, ALL OF THE SYMPTOMS, went away. The constant gut pain. The constant horrid diarrhea. The shaking. The fatigue. I felt like a million bucks. I told my doctor and he sent me to a gastroenterologist.

He said it can't be the wheat.

So I went back to eating wheat again, and within one hour of eating a hamburger bun, bingo, I am having problems again. After 3 days of wheat, I am so sick. 12 trips to the bathroom in one morning. Shaking. Cramps, feeling awful. It's ALL back.

The gastro wants to scope me both ends. How can this be cancer? Cancer isn't responsive to dietary changes like that. And, if I had cancer, I have had it for decades. I have had this gut problem for a long long time, and it got worse.

I don't think I am a celiac, because I don't look like one, they have malabsorption problems, and I am chunky. Besides, there are food allergies in my family, not celiac. Celiac disease is not an allergy, although it involves the immune system.

If I have other allergies, and my family has allergies, why won't he even go down that road? No one in my family has had celiac disease.

( I work in medicine, so I don't want to hear any hokey stuff. I know docs order a lot of tests to keep their places at hospitals, but I don't think he is a bad doc. I just don't think they know allergies can be this bad...)

Should I cancel the invasive scoping and biopsies of my small and large bowels? (There is no known colon cancer in my family.)

Should I just take matters in my own hands, since I can't go to another doc without my insurance company approving and my family doc setting up another consult???

This is ruining my life. I have put up with running to bathrooms and having no social life.

[ravenwoodglass]

The reason for the endo is because that is how they look at your villi. In most cases of celiac the villi are impacted. He wants to do the colonoscopy to check for other possible causes. If you were to want to cancel either test it would be the colonoscopy that I would cancel. That said even with an endo there is a risk of a false negative. The fact that you got so much relief from eliminating gluten is the best diagnostic that there is IMHO. You state that noone else in your family has celiac, well to be honest that really doesn't say much since 97% (National Institute of Health figures not mine) of celiacs are misdiagnosed with another disorder. You did an elimination of gluten, you got relief and the symptoms came back full force when you added it back in. That is pretty diagnostic in itself. The autoimmune impact of celiac can also put the immune system into overdrive leading to a lot of allergies and sensitivities that may or may not resolve on the diet. Celiac itself however is not an allergy it is an autoimmune disease. I would at least get the scope done along with a full celiac panel and then AFTER you are done with all the tests you choose to do get yourself gluten free. You may be surprised how many other issues you may have go into remission.

[DPAZ]

The reason for the endo is because that is how they look at your villi. In most cases of celiac the villi are impacted. He wants to do the colonoscopy to check for other possible causes. If you were to want to cancel either test it would be the colonoscopy that I would cancel. That said even with an endo there is a risk of a false negative. The fact that you got so much relief from eliminating gluten is the best diagnostic that there is IMHO. You state that noone else in your family has celiac, well to be honest that really doesn't say much since 97% (National Institute of Health figures not mine) of celiacs are misdiagnosed with another disorder. You did an elimination of gluten, you got relief and the symptoms came back full force when you added it back in. That is pretty diagnostic in itself. The autoimmune impact of celiac can also put the immune system into overdrive leading to a lot of allergies and sensitivities that may or may not resolve on the diet. Celiac itself however is not an allergy it is an autoimmune disease. I would at least get the scope done along with a full celiac panel and then AFTER you are done with all the tests you choose to do get yourself gluten free. You may be surprised how many other issues you may have go into remission.

I hear what you are saying, but I feel I am going to die of fright from the endoscope. I work in medicine and I have seen them done. I don't breathe well flat on my back and I have a bad gag reflex. I gag when I brush my teeth. I don't want to die of a heart attack from that. I haven't slept in a week and I shake when I think about it...

It doesn't make sense to go after celiac first. I had the blood work done, but haven't heard back yet, may be too soon.

Since I have food allergies, and my family does, why isn't he taking that seriously?

Instead he orders a risky procedure on me. I think it's wheat allergy.

And yes, when I stopped eating wheat, I felt like a new person and I slept better. One gastroenterologist where I work told me they probably wouldn't find celiac anyway, because I have been gluten-free.

[DPAZ]

No one in my family has died of celiac related causes. I am sorry you have experienced this. I have no medical history of celiac.

[tarnalberry]

want to know if it's a wheat allergy or gluten? eat a non-wheat gluten source. symptoms come back, it's gluten intolerance (if not celiac). they don't, it's wheat.

given that only about 1% of celiacs are diagnosed, and the symptoms vary widely (there is no "look" to celiac - it's been disproven as a myth that celiacs are underweight, and not all of them have symptoms of malabsorption), then I wouldn't say "I can't have it if I don't know about a family history". family history is only one factor, and cannot alone rule something out.

[DPAZ]

want to know if it's a wheat allergy or gluten? eat a non-wheat gluten source. symptoms come back, it's gluten intolerance (if not celiac). they don't, it's wheat.

given that only about 1% of celiacs are diagnosed, and the symptoms vary widely (there is no "look" to celiac - it's been disproven as a myth that celiacs are underweight, and not all of them have symptoms of malabsorption), then I wouldn't say "I can't have it if I don't know about a family history". family history is only one factor, and cannot alone rule something out.

I thought oatmeal bothered me, so I will wait a day and introduce it...

Did you have an endoscopy? How were you diagnosed as celiac?

[DPAZ]

How can you say only 1% of celiacs are diagnosed, when we don't know how many there are?

[tarnalberry]

I thought oatmeal bothered me, so I will wait a day and introduce it...

Did you have an endoscopy? How were you diagnosed as celiac?

I wouldn't use oatmeal. Only 10% of celiacs respond to avenin. Rye or barley are your best options for a reasonable test.

And how can they say that only 1% are diagnosed if they don't know how many there are? Studies. http://www.ncbi.nlm.nih.gov/pubmed/1257850...=citationsensor

You don't have to know how many celiacs there actually are, you just have to know the incidence rate in a population, and find out if your diagnosed cases equal the expected number of cases.

[lizard00]

How can you say only 1% of celiacs are diagnosed, when we don't know how many there are?

Do a quick search of this site, or any health related site, and you will find that the percentage of diagnosed celiacs to the number believed to have it is between 1 and 3%,give or take depending on who wrote the article. Here is a link from Celiac Sprue Association, just to get you started.

Open Original Shared Link

I don't have a 'family history' either, but does it mean I don't have it? No. Does it mean others in my family don't have it? No. I'm just the first that figured it out and pursued any sort of testing to speak of.

And while you may feel like you're not being taken seriously, I think that having your doctor setting up the testing says a lot about him/her. Most of us encountered doctors who refused to schedule EGD's because they weren't necessary, since there was no possible way we could have celiac. You have a doctor who seems to be a little more open minded that some. I would have the EGD, but it's a personal decision no one here can make for you.

I hope you get some answers soon

[DPAZ]

Do a quick search of this site, or any health related site, and you will find that the percentage of diagnosed celiacs to the number believed to have it is between 1 and 3%,give or take depending on who wrote the article. Here is a link from Celiac Sprue Association, just to get you started.

Open Original Shared Link

I don't have a 'family history' either, but does it mean I don't have it? No. Does it mean others in my family don't have it? No. I'm just the first that figured it out and pursued any sort of testing to speak of.

And while you may feel like you're not being taken seriously, I think that having your doctor setting up the testing says a lot about him/her. Most of us encountered doctors who refused to schedule EGD's because they weren't necessary, since there was no possible way we could have celiac. You have a doctor who seems to be a little more open minded that some. I would have the EGD, but it's a personal decision no one here can make for you.

I hope you get some answers soon

Thanks for the input.

But my family has a lot of food allergies. I have food allergies. That should put me at an even lower risk of having celiac disease.

The doc may be open to diagnosing celiac disease, but he isn't open to allergies.

I hit up one of the gastros on the floor one night about this and he said if you're not having an inflammation, the biopsy can miss and celiac would not be discovered.

I think I am right about the wheat. When my daughter was small, her testing for food allergies showed a mild sensitiveity to wheat. She is allergic to peanuts and kiwi. Her peanut allergy has sent her into anaphalaxis.

I won't get answers for wheat or grain allergy with scoping or biopsies...

To me, he should be pursuing allergy, if there is such a low incidence of celiac.

[DPAZ]

I never had the Dermititis Herpetiformis either...

[ravenwoodglass]

I hear what you are saying, but I feel I am going to die of fright from the endoscope. I work in medicine and I have seen them done. I don't breathe well flat on my back and I have a bad gag reflex. I gag when I brush my teeth. I don't want to die of a heart attack from that. I haven't slept in a week and I shake when I think about it...

It doesn't make sense to go after celiac first. I had the blood work done, but haven't heard back yet, may be too soon.

Since I have food allergies, and my family does, why isn't he taking that seriously?

Instead he orders a risky procedure on me. I think it's wheat allergy.

And yes, when I stopped eating wheat, I felt like a new person and I slept better. One gastroenterologist where I work told me they probably wouldn't find celiac anyway, because I have been gluten-free.

That gastro was correct, if you are gluten free they wouldn't be able to find celiac. If you are already gluten free the blood work could be a false negative as well. As to the endo though if you should decide to have an endo done after a 3 month gluten challenge if you make the gastro aware of your fears they can do the procedure under a general anesthesia. I have a panic disorder and recently had another colonoscopy done. I was not 'under' for the last one and it was for me a traumatic event and they were unable to even complete the procedure. This time they used a general and it was a breeze, well except for the prep.

Also you may want to consult an allergist who deals with intolerances as well as allergies. They can do allergy testing and then formulate an elimination diet for you that can be very helpful. A true elimination diet is time consuming, you start out with only 5 foods and then add in one food, in pure form, each week to check for reactions. The allergist would formulate your starting foods so that you are getting proper nutrition and an adaquate number of calories.

In my opinion your doctor is a good one for wanting to look for celiac first rather than last. Too many times it is the last thing they think of and that can lead some of us to develop disorders that may or may not resolve once we are finally diagnosed.

[darlindeb25]

We would of never thought we were from a celiac family either. Thing is, many, many family members had issues, but no one knew it was gluten. My sister was diagnosed celiac 9 years ago last March. She and I had the same symptoms, yet I had no money and no insurance, so in July of that year, I too went gluten free. Four years later, our father went gluten free. So, there's the history for our kids to see. You do not need to be celiac to be gluten intolerant, and often times, a gluten intolerant person is much sicker than someone who has celiac. Some celiac's do not have symptoms. Then there are those of us who are gluten intolerant and allergic to gluten...can't eat it, can't have it on our skin. There is a very wide spectrum to this gluten problem.

Open Original Shared Link

Around

[Fiddle-Faddle]

While it would be a good idea to see if there is any gluten-induced intestinal damage, the fact that you have been gluten-free already, as stated above, is going to raise the likelihood of a false negative, as once you are on a gluten-free diet, damaged villi heal quickly.

That said, there's a lot to be said for dietary response as diagnosis. I'm not sure it really matters if you have an official wheat allergy or official celiac disease or official gluten intolerance, as the treatment would be identical: lifelong adherence to a gluten-free diet. Having food allergies does not affect your risk of celiac disease; indeed, many here with celiac disease found that other, seemingly unrelated "allergies" disappeared on a gluten-free diet.

Did you have your blood work done before eliminating gluten from your diet? You may get some definitive answers there without a biopsy, as those tests (if done correctly) are for antibodies to gluten and for gluten-induced auto-antibodies. They are specific for celiac disease, NOT for wheat allergy, and if you are making them, you should not eat gluten, regardless of symptoms. In fact, it seems that the blood work is more accurate than the biopsy, as villi damage is often patchy, and the biopsy takes at most a few tiny samples from some 22 FEET of intestine. Also, the biopsy was defined as the "gold standard" of celiac diagnosis about 50 years ago--several decades before the highly sensitive and specific blood tests of today were developed.

Also, it's a myth that people with celiac are skinny and look malnourished. Nearly half of diagnosed celiacs are overweight, rather than underweight--yet test show that they are also malnourished. Celiac disease has many ramifications, including impacting the thyroid, which controls metabolism. It IS possible--and common--for people with celiac to be both malnourished from malabsorption AND overweight. In my case, I lost 20 pounds in a very short time, simply from eliminating gluten (NOT carbs, but gluten), and yes, I was overweight. That seems to be common amongst members here.

While I agree that your doctor showed sense in wanting an endoscopy, I think that his dismissal of your anecdotal evidence of dietary response is shocking. Had he given you medicine, and you reported similar improvement, he would have certainly assumed that the medicine was working!

Usually, when a treatment (usually medication) seems to control symptoms, doctors today tend to NOT look further, and feel that they have their diagnosis. In the case of celiac disease, if a gluten-free diet obviously works, what would be the point in an invasive procedure to confirm the diagnosis? Either you end up confirming the diagnosis (so why bother, nothing changes) or you have what would most likely be a false negative (if the result is negative, then what? Go back to eating gluten and having terrible symptoms and continuing internal damage?).

I would either look for another doctor at this point, or stay on the gluten-free diet and keep documentation of all improvements AND any lack thereof. If there are any symptoms that either don't go away or recur, further investigation--probably including the dreaded endoscopy--would be warranted.

[DPAZ]

That gastro was correct, if you are gluten free they wouldn't be able to find celiac. If you are already gluten free the blood work could be a false negative as well. As to the endo though if you should decide to have an endo done after a 3 month gluten challenge if you make the gastro aware of your fears they can do the procedure under a general anesthesia. I have a panic disorder and recently had another colonoscopy done. I was not 'under' for the last one and it was for me a traumatic event and they were unable to even complete the procedure. This time they used a general and it was a breeze, well except for the prep.

Also you may want to consult an allergist who deals with intolerances as well as allergies. They can do allergy testing and then formulate an elimination diet for you that can be very helpful. A true elimination diet is time consuming, you start out with only 5 foods and then add in one food, in pure form, each week to check for reactions. The allergist would formulate your starting foods so that you are getting proper nutrition and an adaquate number of calories.

In my opinion your doctor is a good one for wanting to look for celiac first rather than last. Too many times it is the last thing they think of and that can lead some of us to develop disorders that may or may not resolve once we are finally diagnosed.

IF he was a good doctor, he would have told me that the bloodwork and the scopes arent going to show anything, if I am gluten-free!!! How is he a good doc? Now the blood work was a waste of time!

I am calling his office up Monday and tellling him about this. I have not been 3 months with a gluten challenge!

Now I am really upset.

My insurance isnt going to let me me redo all of this testing. Why didn't he tell me this? Why didn't he tell me to eat gluten for 3 months and then do the tests?

I had the blood work done and I was gluten-free.

I am very familiar with elimination diets, ad I have food allergies and my daughter did too. That was how my dairy allergy was found.

That's not a general anesthesia they use. They don't intubate you. It's a strong deep sleep. I can't see where they'd do a general on someone for a scope. But maybe I am worng/

I can't go to an allergist without referral from my family doc and he is adamant about me getting scoped .

[DPAZ]

We would of never thought we were from a celiac family either. Thing is, many, many family members had issues, but no one knew it was gluten. My sister was diagnosed celiac 9 years ago last March. She and I had the same symptoms, yet I had no money and no insurance, so in July of that year, I too went gluten free. Four years later, our father went gluten free. So, there's the history for our kids to see. You do not need to be celiac to be gluten intolerant, and often times, a gluten intolerant person is much sicker than someone who has celiac. Some celiac's do not have symptoms. Then there are those of us who are gluten intolerant and allergic to gluten...can't eat it, can't have it on our skin. There is a very wide spectrum to this gluten problem.

Open Original Shared Link

There is a very good book, "Healthier Without Wheat" by Dr. Stephen Wangen, the Gluten Intolerance Doctor...you might find it very interesting.

Thanks for the link and the book!

I will definitely check them out.

It semes people have to just find this on their own.

[DPAZ]

That gastro was correct, if you are gluten free they wouldn't be able to find celiac. If you are already gluten free the blood work could be a false negative as well. As to the endo though if you should decide to have an endo done after a 3 month gluten challenge if you make the gastro aware of your fears they can do the procedure under a general anesthesia. I have a panic disorder and recently had another colonoscopy done. I was not 'under' for the last one and it was for me a traumatic event and they were unable to even complete the procedure. This time they used a general and it was a breeze, well except for the prep.

Also you may want to consult an allergist who deals with intolerances as well as allergies. They can do allergy testing and then formulate an elimination diet for you that can be very helpful. A true elimination diet is time consuming, you start out with only 5 foods and then add in one food, in pure form, each week to check for reactions. The allergist would formulate your starting foods so that you are getting proper nutrition and an adaquate number of calories.

In my opinion your doctor is a good one for wanting to look for celiac first rather than last. Too many times it is the last thing they think of and that can lead some of us to develop disorders that may or may not resolve once we are finally diagnosed.

No offense, I am going to find out if all of this is true., because then this doctor has ordered tests on me without the full information. I am going to call them Monday.

What you are tellling me and what the doctor is doing are contradictory.

[ravenwoodglass]

No offense, I am going to find out if all of this is true., because then this doctor has ordered tests on me without the full information. I am going to call them Monday.

What you are tellling me and what the doctor is doing are contradictory.

A good source of into is the NIH National Institute of Health, you can also check what WebMD has to say as well as the Celiac Sprue Association.

[ravenwoodglass]

IF he was a good doctor, he would have told me that the bloodwork and the scopes arent going to show anything, if I am gluten-free!!! How is he a good doc? Now the blood work was a waste of time!

I am calling his office up Monday and tellling him about this. I have not been 3 months with a gluten challenge!

Now I am really upset.

My insurance isnt going to let me me redo all of this testing. Why didn't he tell me this? Why didn't he tell me to eat gluten for 3 months and then do the tests?

I had the blood work done and I was gluten-free.

I am very familiar with elimination diets, ad I have food allergies and my daughter did too. That was how my dairy allergy was found.

That's not a general anesthesia they use. They don't intubate you. It's a strong deep sleep. I can't see where they'd do a general on someone for a scope. But maybe I am worng/

I can't go to an allergist without referral from my family doc and he is adamant about me getting scoped .

Not all GI doctors are as up to date on celiac as you might think. If they were I would have been diagnosed many, many years before I was and I would not have the permanent damage to my other organs that I have, in my case the brain and nervous system and kidneys.

I most definately did have full anesthesia with my last colonoscopy but they did it intravaneously. Usually they use what is called a twilight drug that basically causes amnesia for the event and sedation. I did not react well to that drug, in my case it was Versed so they used an anesthesiologist for the second procedure who put me out completely. You are correct however that it was not a form of anesthesia in which they had to intubate.

[no-more-muffins]

I personally wouldn't waste the money on the scope. I think that the idea of a gluten challenge is just totally unnecessary. If you know you don't tolerate wheat and it makes you totally sick, why eat it just so a dr. can stick a scope down your throat and POSSIBLY find celiac?

I had an endo a couple of weeks ago and all the tests were normal. I just wasted SO much money because I was going to go gluten-free regardless of the results. I do believe that I am gluten intolerant and I have been gluten-free 2 weeks. I can already tell a difference.

If I were going to do any tests I'd do the gluten one at enterolab. It is much cheaper than the endo, much more sensitive and you can do it when you are gluten-free up to a year. (I am sending in my sample tomorrow.)

I also recommend the book that was mentioned by Stephen Wangen. Very informative. I wouldn't waste your time and money on invasive procedures when you already know how gluten affects you.

Just my 2 cents.

[ravenwoodglass]

I personally wouldn't waste the money on the scope. I think that the idea of a gluten challenge is just totally unnecessary. If you know you don't tolerate wheat and it makes you totally sick, why eat it just so a dr. can stick a scope down your throat and POSSIBLY find celiac?

I had an endo a couple of weeks ago and all the tests were normal. I just wasted SO much money because I was going to go gluten-free regardless of the results. I do believe that I am gluten intolerant and I have been gluten-free 2 weeks. I can already tell a difference.

If I were going to do any tests I'd do the gluten one at enterolab. It is much cheaper than the endo, much more sensitive and you can do it when you are gluten-free up to a year. (I am sending in my sample tomorrow.)

I also recommend the book that was mentioned by Stephen Wangen. Very informative. I wouldn't waste your time and money on invasive procedures when you already know how gluten affects you.

Just my 2 cents.

And those 2 cents are very valuable. I tend to agree with your thinking.

[DPAZ]

While it would be a good idea to see if there is any gluten-induced intestinal damage, the fact that you have been gluten-free already, as stated above, is going to raise the likelihood of a false negative, as once you are on a gluten-free diet, damaged villi heal quickly.

That said, there's a lot to be said for dietary response as diagnosis. I'm not sure it really matters if you have an official wheat allergy or official celiac disease or official gluten intolerance, as the treatment would be identical: lifelong adherence to a gluten-free diet. Having food allergies does not affect your risk of celiac disease; indeed, many here with celiac disease found that other, seemingly unrelated "allergies" disappeared on a gluten-free diet.

Did you have your blood work done before eliminating gluten from your diet? You may get some definitive answers there without a biopsy, as those tests (if done correctly) are for antibodies to gluten and for gluten-induced auto-antibodies. They are specific for celiac disease, NOT for wheat allergy, and if you are making them, you should not eat gluten, regardless of symptoms. In fact, it seems that the blood work is more accurate than the biopsy, as villi damage is often patchy, and the biopsy takes at most a few tiny samples from some 22 FEET of intestine. Also, the biopsy was defined as the "gold standard" of celiac diagnosis about 50 years ago--several decades before the highly sensitive and specific blood tests of today were developed.

Also, it's a myth that people with celiac are skinny and look malnourished. Nearly half of diagnosed celiacs are overweight, rather than underweight--yet test show that they are also malnourished. Celiac disease has many ramifications, including impacting the thyroid, which controls metabolism. It IS possible--and common--for people with celiac to be both malnourished from malabsorption AND overweight. In my case, I lost 20 pounds in a very short time, simply from eliminating gluten (NOT carbs, but gluten), and yes, I was overweight. That seems to be common amongst members here.

While I agree that your doctor showed sense in wanting an endoscopy, I think that his dismissal of your anecdotal evidence of dietary response is shocking. Had he given you medicine, and you reported similar improvement, he would have certainly assumed that the medicine was working!

Usually, when a treatment (usually medication) seems to control symptoms, doctors today tend to NOT look further, and feel that they have their diagnosis. In the case of celiac disease, if a gluten-free diet obviously works, what would be the point in an invasive procedure to confirm the diagnosis? Either you end up confirming the diagnosis (so why bother, nothing changes) or you have what would most likely be a false negative (if the result is negative, then what? Go back to eating gluten and having terrible symptoms and continuing internal damage?).

I would either look for another doctor at this point, or stay on the gluten-free diet and keep documentation of all improvements AND any lack thereof. If there are any symptoms that either don't go away or recur, further investigation--probably including the dreaded endoscopy--would be warranted.

This guy is getting ONE more chance from me, as his nurse would not take my questions on the phone, and she didn

[DPAZ]

I personally wouldn't waste the money on the scope. I think that the idea of a gluten challenge is just totally unnecessary. If you know you don't tolerate wheat and it makes you totally sick, why eat it just so a dr. can stick a scope down your throat and POSSIBLY find celiac?

I had an endo a couple of weeks ago and all the tests were normal. I just wasted SO much money because I was going to go gluten-free regardless of the results. I do believe that I am gluten intolerant and I have been gluten-free 2 weeks. I can already tell a difference.

If I were going to do any tests I'd do the gluten one at enterolab. It is much cheaper than the endo, much more sensitive and you can do it when you are gluten-free up to a year. (I am sending in my sample tomorrow.)

I also recommend the book that was mentioned by Stephen Wangen. Very informative. I wouldn't waste your time and money on invasive procedures when you already know how gluten affects you.

Just my 2 cents.

Thanks for the information, this has been very valuable to me!!

[DPAZ]

Thanks for the information, this has been very valuable to me!!

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...

[DPAZ]

I went back to the gastroenterologist. He has a terrible office staff. I was given an appointment and showed up and was told,