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Wheat Allergy Vs. Celiac Diseases


DPAZ

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DPAZ Newbie

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. :lol:

He said it can't be the wheat. :blink::o

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. :(:(:(

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ravenwoodglass Mentor

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.

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DPAZ Newbie
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.

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DPAZ Newbie

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.

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tarnalberry Community Regular

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.

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DPAZ Newbie
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?

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DPAZ Newbie

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

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tarnalberry Community Regular
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.

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lizard00 Enthusiast
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.

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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 :)

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DPAZ Newbie
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.

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DPAZ Newbie

I never had the Dermititis Herpetiformis either...

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ravenwoodglass Mentor
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.

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darlindeb25 Collaborator

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.

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Fiddle-Faddle Community Regular

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.

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DPAZ Newbie
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! :angry:

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 .

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DPAZ Newbie
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.

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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.

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DPAZ Newbie
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.

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ravenwoodglass Mentor
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.

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ravenwoodglass Mentor
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! :angry:

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.

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no-more-muffins Apprentice

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.

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ravenwoodglass Mentor
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.

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DPAZ Newbie
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

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DPAZ Newbie
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!!

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DPAZ Newbie
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...

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DPAZ Newbie

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

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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