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Fran4

Sick all the time

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Joined this website to try to feel a little less alone. I was diagnosed with celiac disease 5 years ago and have been on a strict gluten free diet since then. I felt better for about a year but since then my health issues have been all over the place. I have chronic migraines which took 4 years to find any medication that worked and I just always seem to feel bad. My body never feels right. I deal with horrible anxiety because of this because I fear that there is something more wrong with me like I am going to die but the doctors say I'm fine. They told me to see a therapist because it is "in my head". Which I did and I still feel sick all the time. I didn't know that having celiac disease could cause so many side effects. I can cope for the most part but sometimes it really weighs me down not feeling good all the time. I also just feel like a burden to my family, friends, or boyfriend that I am always sick and feeling bad. I feel like it will make them hate me and leave cause its too annoying to deal with. I don't know if anyone else feels this way but just so much feels wrong all the time and its overwhelming and defeating. Some things I deal with are the sensation of being full without eating, random muscle fatigue, anxiety, belly pains, acid reflux, breathing issues, fatigue, head aches, and constipation. Really looking for any advice. 

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Celiac.com Sponsor (A8):

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Welcome to the forum, Fran4!

It is common for people with celiac disease to develop allergies and intolerances to foods that do not contain gluten. Celiac disease sets the immune system on edge and it overreacts to a lot of different things besides gluten to produce similar symptoms. Dairy and soy allergies/intolerances are quite common and we are hearing on the forum from posters that eggs and corn are also causing problems for many celiacs. Also, about 10% of celiacs react to the protein in oats like they do that in wheat, barley and rye. So my suggestion is that you begin to look for reactions to other, non gluten foods that could be causing your symptoms. 

Are you taking any vitamin and mineral supplements? Celiacs typically suffer from vitamin and mineral deficiencies because celiac disease damages the lining of the small bowel where these things are absorbed into the body. If you are not already, I would suggest you start taking a good adult multivitamin and a high potency B-complex. Costco's Nature Made brand are excellent, gluten free products in that regard. Nutrient deficiencies can often produce mood problems such as depression.

I too suffer from cluster headaches and an occasional migraine. Sumatriptan works well for me. Usually, I can get by on half a tab (25mg) if I take it early in the onset. What are you on if you don't mind me asking.

It is often the case that our perception of what others are thinking/feeling about us is inaccurate. Have family members and boyfriend said things to you that make you feel that you are a burden or is this your assumption?

Edited by trents

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4 minutes ago, trents said:

Welcome to the forum, Fran4.

It is common for people with celiac disease to develop allergies and intolerances to foods that do not contain gluten. Celiac disease sets the immune system on edge and it overreacts to a lot of different things besides gluten to produce similar symptoms. Dairy and soy allergies/intolerances are quite common and we are hearing on the forum from posters that eggs and corn are also causing problems for many celiacs. Also, about 10% of celiacs react to the protein in oats like they do that in wheat, barley and rye. So my suggestion is that you begin to look for reactions to other, non gluten foods that could be causing your symptoms. 

Are you taking any vitamin and mineral supplements? Celiacs typically suffer from vitamin and mineral deficiencies because celiac disease damages the lining of the small bowel where these things are absorbed into the body. If you are not already, I would suggest you start taking a good adult multivitamin and a high potency B-complex. Costco's Nature Made brand are excellent, gluten free products in that regard. Nutrient deficiencies can often produce mood problems such as depression.

I too suffer from cluster headaches and an occasional migraine. Sumatriptan works well for me. Usually, I can get by on half a tab (25mg) if I take it early in the onset. What are you on if you don't mind me asking.

It is often the case that our perception of what others are thinking/feeling about us is inaccurate. Have family members and boyfriend said things to you that make you feel that you are a burden or is this your assumption?

I think I will start a food journal then too see if there is any food that is causing problems with my gut. I was on vitamins for little bit but then stopped because weird things were happening with my body and my doctor told me to stop taking them to see if that would help. I think it was my probiotic though that was causing me numbness in my hands and feet, so I should start taking vitamins again. I have seen from other people's posts now that some of my side effects can be from low b12. I

have been on 30 mg of Nortriptyline daily for almost a year now for my migraines. It has been huge in helping reduce the number of migraines I have weekly and their severity. 

No, they have never said anything about it being too much but I just worry. Having celiac disease already affects my life so much I don't want it to ruin other aspects. It is probably an irrational fear. 

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Several of our forum members are really knowledgeable with regard to vitamin and mineral deficiencies. Hopefully, some of them will chime in with some more targeted suggestions. Yes, B12 deficiency is very common in the celiac population and so are thiamine, niacin and magnesium. A good high potency B-complex along with a multivitamin should cover most of those bases. B vitamins are water soluble so there should be no danger in overdosing. You just pee out the excess.

Edited by trents

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Just now, trents said:

Several of our forum members are really knowledgeable with regard to vitamin and mineral deficiencies. Hopefully, some of them will chime in with some more targeted suggestions. Yes, B12 deficiency is very common in the celiac population and so are thiamine, niacin and magnesium. A good high potency B-complex along with a multivitamin should cover most of those bases.

Thank you so much for your help! 

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Fran4, 

Welcome to the forum!   

I'm a migraine sufferer, as well. 

I get ophthalmic migraines, with visual disturbances when exposed to triggers (foods like gluten, dairy, and computer screens).  I found my chronic migraines respond well to high dose Thiamine.  I also take a B Complex because all of the eight B vitamins need each other to work properly.  Riboflavin is also beneficial for migraines.   And I take magnesium because it helps thiamine work.

Here's a link to Dr. Lonsdale and Dr. Marrs' website on thiamine deficiency and its health problems.  Be sure to scroll to the very, very bottom for the doctors' responses to questions.

"Migraine, Diet, and Thiamine"

https://www.hormonesmatter.com/migraine-diet-thiamine/

And...

https://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

And....

https://www.google.com/search?q=migraines+and+thiamine+deficiency&oq=migraines+and+thiamine+deficiency&aqs=heirloom-srp..0l5

 

Celiac Disease damages the small intestine where most of the B vitamins are absorbed, like trents said.  Thiamine and most of the other B vitamins can't be stored in the body for long.  Thiamine deficiency can occur in as little as ten days.  

Thiamine is used throughout the body and brain to provide energy to your cells.  During illness or times of stress, your body requires more vitamins, especially thiamine.   

The symptoms you listed at the bottom of your post are all subtle symptoms of thiamine deficiency.  I had them all. And I was told it was all in my head, too.  My doctors were clueless about vitamin deficiencies and Celiac Disease. Through a ton of research, I found Dr. Lonsdale's high dose thiamine and it really does work! 

I hope this helps!  

 

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7 hours ago, knitty kitty said:

Fran4, 

Welcome to the forum!   

I'm a migraine sufferer, as well. 

I get ophthalmic migraines, with visual disturbances when exposed to triggers (foods like gluten, dairy, and computer screens).  I found my chronic migraines respond well to high dose Thiamine.  I also take a B Complex because all of the eight B vitamins need each other to work properly.  Riboflavin is also beneficial for migraines.   And I take magnesium because it helps thiamine work.

Here's a link to Dr. Lonsdale and Dr. Marrs' website on thiamine deficiency and its health problems.  Be sure to scroll to the very, very bottom for the doctors' responses to questions.

"Migraine, Diet, and Thiamine"

https://www.hormonesmatter.com/migraine-diet-thiamine/

And...

https://www.hormonesmatter.com/dietary-mayhem-disease-thiamine-choked-engine-syndrome/

And....

https://www.google.com/search?q=migraines+and+thiamine+deficiency&oq=migraines+and+thiamine+deficiency&aqs=heirloom-srp..0l5

 

Celiac Disease damages the small intestine where most of the B vitamins are absorbed, like trents said.  Thiamine and most of the other B vitamins can't be stored in the body for long.  Thiamine deficiency can occur in as little as ten days.  

Thiamine is used throughout the body and brain to provide energy to your cells.  During illness or times of stress, your body requires more vitamins, especially thiamine.   

The symptoms you listed at the bottom of your post are all subtle symptoms of thiamine deficiency.  I had them all. And I was told it was all in my head, too.  My doctors were clueless about vitamin deficiencies and Celiac Disease. Through a ton of research, I found Dr. Lonsdale's high dose thiamine and it really does work! 

I hope this helps!  

 

I have never heard of a thiamine deficiency. Ill look into it! Thank you so much for your response and the articles you attached. 

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8 hours ago, trents said:

Oh! Have you been checked recently for iron deficiency anemia? You mentioned you suffered from fatigue.

I have been checked for anemia a couple times and always seem to be right on the bottom of the normal range but have never been diagnosed. 

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