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asymmetricOCD

Gluten Free Now I'm Ok?

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To anyone that can shed a light on my situation please do.

I was first diagnosed with having the H. Pylori bacteria and was medicated for that to get rid of the bacteria. The doctor told me then to try a wheat/gluten free diet to see if I would feel better. He suspected it would because my blood test had come back positive with anti-bodies.

After having been on the diet for a little while, 2 weeks a month maybe I went back for a check up. I was feeling better and he told me then that the wheat/gluten intolerance/allergy could have been the cause of all the mental disorders I had gone through the previous 3 years of my life. It was a big wave of relief and distress because of the horrible anxiety and grief I had been through with the psychiatrists and mental illnesses, but now at least I wasn't crazy.

I've been trying my best and have been 100% reading labels before I eat anything to make sure nothing lies within the food that I can't eat. No maltodextrin until sure of it's source, no artificial flavorings. The doctor had told me that there was a possibility that because the way the wheat/gluten affected me mentally that the serotonin mishap in my brain could cause permanent calcification of my brain to indefinitely alter my brain and/or personality which is an extremely scary thing to think and it makes me even more paranoid about the food I eat.

Today has been about 8 months on a gluten free diet and I just am not feeling all that much better off wheat than I was on it. I ate a few crackers and have felt better! I just ate a slice of wheat-full pizza and feel... great!

Is there a possibility this was a misdiagnosed or proposed notion that I am gluten intolerant or will my stomach continue to feel fine and my brain and other organs slowly rot..?

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To anyone that can shed a light on my situation please do.

I was first diagnosed with having the H. Pylori bacteria and was medicated for that to get rid of the bacteria. The doctor told me then to try a wheat/gluten free diet to see if I would feel better. He suspected it would because my blood test had come back positive with anti-bodies.

After having been on the diet for a little while, 2 weeks a month maybe I went back for a check up. I was feeling better and he told me then that the wheat/gluten intolerance/allergy could have been the cause of all the mental disorders I had gone through the previous 3 years of my life. It was a big wave of relief and distress because of the horrible anxiety and grief I had been through with the psychiatrists and mental illnesses, but now at least I wasn't crazy.

I've been trying my best and have been 100% reading labels before I eat anything to make sure nothing lies within the food that I can't eat. No maltodextrin until sure of it's source, no artificial flavorings. The doctor had told me that there was a possibility that because the way the wheat/gluten affected me mentally that the serotonin mishap in my brain could cause permanent calcification of my brain to indefinitely alter my brain and/or personality which is an extremely scary thing to think and it makes me even more paranoid about the food I eat.

Today has been about 8 months on a gluten free diet and I just am not feeling all that much better off wheat than I was on it. I ate a few crackers and have felt better! I just ate a slice of wheat-full pizza and feel... great!

Is there a possibility this was a misdiagnosed or proposed notion that I am gluten intolerant or will my stomach continue to feel fine and my brain and other organs slowly rot..?

I am in a similar situation, although I haven't been off gluten for as long. My biggest difference off gluten was lack of depression, anxiety and my confidence has tripled. I also tried to "gluten" myself, just to see what happened, and I had no gastro symptoms at all. But then over the next week, my mood steadily declined.

Another celiac suggested I may be intolerant to other things, so I'm going to look into that also, could there be something else in your diet that is still holding you back?

I am interested to know how many others are asymptomatic, with mental issues being the main symptom of gluten. I know I am much healthier off gluten, but it's hard to wrap my head around it if I don't have any gastro probs with it.

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I am in a similar situation, although I haven't been off gluten for as long. My biggest difference off gluten was lack of depression, anxiety and my confidence has tripled. I also tried to "gluten" myself, just to see what happened, and I had no gastro symptoms at all. But then over the next week, my mood steadily declined.

Another celiac suggested I may be intolerant to other things, so I'm going to look into that also, could there be something else in your diet that is still holding you back?

I am interested to know how many others are asymptomatic, with mental issues being the main symptom of gluten. I know I am much healthier off gluten, but it's hard to wrap my head around it if I don't have any gastro probs with it.

That's the way it is with me! I can't understand a disease or intolerance that doesn't actually affect me, as it seems. I've been writing down everything I've eaten for a week, while OFF gluten and I just can't seem to find what's affecting me. My stomach seems to do somersaults besides the gluten. I ate the pieces of pizza last night and seem to be fine!

I'm looking at to just get a biopsy and be done with this thing either way if I do or don't have it but I have to worry about pre-existing conditions because my insurance will be changing in the next 6 months.

I wonder how many people have the mental side effect as well, it's a conundrum.

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To anyone that can shed a light on my situation please do.

I was first diagnosed with having the H. Pylori bacteria and was medicated for that to get rid of the bacteria.

I can't answer your questions but (i expect others here can) 25 years ago (took 39 years for a Celiac Diagnosis) I was diagnosed with having the H. Pylori bacteria through a positive blood test and i was treated for it with medication... My symptoms remained after finishing the course of medication and the DR told me i would still experience pain after eating certain foods due to scarring left by the ulcer. When all those years later i had an endoscopy and biopsy for the Celiac diagnosis the GI told me that I had never had an ulcer as it would have been visible via the scope (scarring).. Basically i ignored the tremendous amount of pain i was in because of what the DR said and because of the diagnosis so did the DRs EVERYTIME i went back to see them. In my situation, the H.Pylori bacteria (through a blood test) was one of my misdiagnosis, that was my Celiacs, popping it's head up yet again for the Drs to notice, if only they had diagnosed me then i probably wouldn't have all the other health issues i have now......

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Consondcat,

I'm sorry for your humongous misdiagnosis of the H. Pylori. I'm feeling very lost now and have only been on this journey of diagnosis/misdiagnosis for 4 or 5 years. I was in shock almost when the doctor told me the wheat could have been the cause of my mental issues, I cannot imagine the shock you felt after 25 years!

I found a website that goes into more detail of brain allergies for anyone reading this little topic.

http://www.wholeapproach.com/newsletter/ar...3/04_April.html

I found it pretty interesting anyways. Now I'm wondering if I possibly have an allergy to something completely different from gluten that could have caused my mental ordeals. It all started very slowly then progressed rapidly while being put on heavy anti-psychotics so maybe that's a cause. *sigh*

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Did you have any digestive issues before trying gluten-free? If not, it may be that your mental issues were caused by diet but was caught before you had major digestive issues - therefore you wouldn't see a day to day reaction when ingesting gluten -- doesn't mean it won't set you back.

Curious -- did your doctor check your iron, ferritin, b, d, k levels before you went gluten free.

If some or all of these nutrients are low it makes sense that your neurotransmitters may also be low which can cause all sorts of mental & physical problems.

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Did you have any digestive issues before trying gluten-free? If not, it may be that your mental issues were caused by diet but was caught before you had major digestive issues - therefore you wouldn't see a day to day reaction when ingesting gluten -- doesn't mean it won't set you back.

Curious -- did your doctor check your iron, ferritin, b, d, k levels before you went gluten free.

If some or all of these nutrients are low it makes sense that your neurotransmitters may also be low which can cause all sorts of mental & physical problems.

I had few digestive issues that weren't very bad like gas. I've never had many of the bad symptoms until more recently while being gluten free which is completely frustrating. That does make sense though about the doctors catching the mental before digestive. A few of my siblings are lactose intolerant so allergies do run in my family. As well as mental illnesses. My Mom and my Dad's father were adopted though so the family tree only runs with my immediate family pretty much.

Doctor did not test for any of those vitamin deficiencies before suggesting celiacs/gluten free diet. I called him yesterday and he said I won't know anything until I get a biopsy done but that the symptoms will come back while eating gluten.. so I'm not sure if he thinks surely I have it anyways.

I'm stuck as what to do because my insurance is running out in January and I don't get new insurance for another 5 months from now. I want to be sure of what I have but I've heard Celiacs is considered a pre-existing condition. :(

So if I do have gluten-intolerance causing "brain allergy" at least I'm thinking that I don't have to be as meticulous when I eat. I think as long as I don't eat things that obviously have wheat in them I should be fine but I'll start to not worry as harshly about "artificial flavorings" or "spices" maybe as it's a small trace of "possible" wheat.

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I had few digestive issues that weren't very bad like gas. I've never had many of the bad symptoms until more recently while being gluten free which is completely frustrating. That does make sense though about the doctors catching the mental before digestive. A few of my siblings are lactose intolerant so allergies do run in my family. As well as mental illnesses. My Mom and my Dad's father were adopted though so the family tree only runs with my immediate family pretty much.

Doctor did not test for any of those vitamin deficiencies before suggesting celiacs/gluten free diet. I called him yesterday and he said I won't know anything until I get a biopsy done but that the symptoms will come back while eating gluten.. so I'm not sure if he thinks surely I have it anyways.

I'm stuck as what to do because my insurance is running out in January and I don't get new insurance for another 5 months from now. I want to be sure of what I have but I've heard Celiacs is considered a pre-existing condition. :(

So if I do have gluten-intolerance causing "brain allergy" at least I'm thinking that I don't have to be as meticulous when I eat. I think as long as I don't eat things that obviously have wheat in them I should be fine but I'll start to not worry as harshly about "artificial flavorings" or "spices" maybe as it's a small trace of "possible" wheat.

Something strange going on here. You say you have been gluten free for eight months, had few digestive issues before then, and the doctor now says he can't diagnose you without a biopsy. If you have been gluten free for eight months a biopsy will be useless at this point. You would have to go back on gluten for 2-3 months for a biopsy to be valid, and if your symptoms were primarily mental you may not have any intestinal damage anyway. I gather he did no testing to back up his possible mental diagnosis, like a brain scan for UBO's????(unidentified bright objects) This is the most common symptom/test for those whose brains have been affected by gluten. And if your brain!!! is affected by gluten, you surely do not want to eat it, that's for sure. I think it's time you got a second opinion from someone knowledgeable.

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So if I do have gluten-intolerance causing "brain allergy" at least I'm thinking that I don't have to be as meticulous when I eat. I think as long as I don't eat things that obviously have wheat in them I should be fine but I'll start to not worry as harshly about "artificial flavorings" or "spices" maybe as it's a small trace of "possible" wheat.

Sure as long as you don't mind risking losing the ability to walk a straight line or at all, or you don't mind your brain getting so foggy that you can't think well enough to read or retain info, as long as you don't mind getting on an emotional rollercoaster or even perhaps becomeing incontinent. Then yea if you don't mind those issues and others that can stem from neuro predominant celiac you can be lax on the diet.

IMHO those of us with brain impact need to be just as strict as folks who have severe stomach symptoms. Not less.

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Something strange going on here. You say you have been gluten free for eight months, had few digestive issues before then, and the doctor now says he can't diagnose you without a biopsy. If you have been gluten free for eight months a biopsy will be useless at this point. You would have to go back on gluten for 2-3 months for a biopsy to be valid, and if your symptoms were primarily mental you may not have any intestinal damage anyway. I gather he did no testing to back up his possible mental diagnosis, like a brain scan for UBO's????(unidentified bright objects) This is the most common symptom/test for those whose brains have been affected by gluten. And if your brain!!! is affected by gluten, you surely do not want to eat it, that's for sure. I think it's time you got a second opinion from someone knowledgeable.

Well if I continue eating gluten now for another 2-3 months and then get the biopsy that would work well in the timing of things anyways to wait 2-3 months. I'm so very paranoid about doctors as I've been misdiagnosed with severe diseases in the past all beginning at almost 17 years old.. Hospitalized for various mental psychosis' three times in my life is enough to continue my fear of doctors and their whims. The only time that I've had any kind of brain scan was when I was 16 almost 17 and had some tests done when I started having auditory hallucinations. Then they determined I did not have anything physically wrong with me but that I was schizophrenic. Only a few brain scans and simple blood tests for "physical" out the door.

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Sure as long as you don't mind risking losing the ability to walk a straight line or at all, or you don't mind your brain getting so foggy that you can't think well enough to read or retain info, as long as you don't mind getting on an emotional rollercoaster or even perhaps becomeing incontinent. Then yea if you don't mind those issues and others that can stem from neuro predominant celiac you can be lax on the diet.

IMHO those of us with brain impact need to be just as strict as folks who have severe stomach symptoms. Not less.

It's very scary and I'm so paranoid if I'm eating wheat or not and it makes me feel bad when I'm constantly asking people if they cooked my food right.. such as my Mom or something. Thank you for your reply and the straight forward look at the complications that could be caused by this. Do you know if it's mostly gluten that is the cause of brain allergies or could it possibly be something else besides or in addition?

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It's very scary and I'm so paranoid if I'm eating wheat or not and it makes me feel bad when I'm constantly asking people if they cooked my food right.. such as my Mom or something. Thank you for your reply and the straight forward look at the complications that could be caused by this. Do you know if it's mostly gluten that is the cause of brain allergies or could it possibly be something else besides or in addition?

You don't have a brain 'allergy' what you have is the gluten antibodies attacking your brain. If you have the antibodies, which you do if you had a postive test for celiac, you need to stop the antibodies from forming and the way to do is that is being very strict with the diet. The best way to ease your fear with eating food your Mom cooks, or anyone else for that matter is to get them educated about celiac. Can you bring her here to read some posts? That may help. You need to have as clean of a diet as you can, try to eat mostly whole unprocessed foods, meats, veggies, fruits, rice, potatoes, eggs etc.

Gluten can cause many brain issues, from the ataxia (issues with balance), to depression, anxiety and more. It can take time for healing to take place although some see resolution fairly quickly. There are of course times when mental issues are being caused by a combination of gluten and other factors in celiacs. But many will see a great deal of improvement after they have healed and the antibodies have stopped their attack.

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You don't have a brain 'allergy' what you have is the gluten antibodies attacking your brain. If you have the antibodies, which you do if you had a postive test for celiac, you need to stop the antibodies from forming and the way to do is that is being very strict with the diet. The best way to ease your fear with eating food your Mom cooks, or anyone else for that matter is to get them educated about celiac. Can you bring her here to read some posts? That may help. You need to have as clean of a diet as you can, try to eat mostly whole unprocessed foods, meats, veggies, fruits, rice, potatoes, eggs etc.

Gluten can cause many brain issues, from the ataxia (issues with balance), to depression, anxiety and more. It can take time for healing to take place although some see resolution fairly quickly. There are of course times when mental issues are being caused by a combination of gluten and other factors in celiacs. But many will see a great deal of improvement after they have healed and the antibodies have stopped their attack.

Well I think the thing I need to do (now that I've learned my insurance-to-be does not case "pre-existing" conditions) is to get surely tested for the gluten-antibodies. I've been writing down many things to ask the doctor when I go in a few days. I would have to be on a a diet with gluten for 2-3 months before it would be accurate to have a biopsy done?

Thank you!

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I would have to be on a a diet with gluten for 2-3 months before it would be accurate to have a biopsy done?

Thank you!

Yes although if you become ill from the challenge that is a valid diagnosis also. I would suggest when you go back on gluten for the first week challenge it with something like cream of wheat or triscuits for that first week. If you go back to gluten by all of a sudden eating stuff like fast food and pizza you may feel a bit of confusion wondering if it was the gluten or a sudden increase in greasy or spicy food.

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