After Being gluten-free For 8 Months, I Am Pretty Sure That I Am A Celiac.

[marciab]

Hi,

I wasn't tested by my GI for celiac, but after 8 months on the gluten free diet, 10 months on the elimination diet, I am beginning to think I am.

I read where seizures can be a celiac reaction to gluten. And in the last 6 weeks I have been able to cut back significantly on my Klonopin. I was taking it for nocturnal myoclonous and daytime seizures. I was at .5 mg at bedtime 6 weeks ago and now I'm at .125 mg. I have been on seizure meds for 16 years.

I first noticed that I was no longer hyper when I stopped eating gluten 8 months ago, but got carried away with making my own gluten-free breads and evidently was getting glutenned. Bob's ...

I started having severe digestive problems - "D", "C", non stop gas, GERD, horrific pains and stomach cramps a few years ago. They ended up removing my gall bladder. And then doing an endoscopy and colonoscopy to see why I was still having problems. I was told that I have acid reflux, IBS, diverticulitus, etc and to take Nexium, etc. Nothing helped until I went on the elimination / gluten-free diet. I am still having some problems, but I am eating a large variety of foods at this point and I just came off Niferex which about killed me.

I'm wondering if my gall bladder surgery triggered full blown celiac. I have seen reference on this board to full blown celiac, but I'm not sure what that means.

Also, I have read that we develop allergies / sensitivities to foods that we eat too often. But, my friends and family are eating the same foods all the time. Maybe not as much as I do though. I do tend to go on food binges.

What do you think ? I have grown to trust your opinions more than anyone's when it comes to digestive problems .... Celiac or allergies or both ???? Thanks for being here... Marcia.

[marciab]

Hi there

It's me again. Sorry to bother ya'll but I didn't get any responses yet and I am dying to know what ya'll think. Since I am relatively new to the board, I'm assuming ya'll have seen this before.

I don't take any other meds. Just the Klonopin. I started weaning myself off the Klonopin because I was feeling completely drugged all day long about 6 weeks ago. This is the most awake I have been in a very long time. I plan on stopping the Klonopin completely, just slowly so I don't risk having seizures.

Oh, and I had reactions to wheat when I did the wheat challenges several months ago. I had horrible "D" one time and then "C" followed by cramps, pain, bloating and "D" the next time. The only other time I've gotten that bloated and in pain was when taking the Niferex or eaten forbiden foods.

And could it be that I started eating foods with a high nutritional value and mostly organic ? Is this perimenapausal ?

I saw my doctor about this, but all she said was that no one knows what causes Fibromyalgia and she would be ok if I stayed at the .125 dosage. Actually encouraged me to stay on the Klonopin. She still thinks I am nuts. LOL I asked her if she thought the gluten had caused the seizures, but she said she didn't know.

How much is known about the non digestive reactions to gluten ? My pharmacist told me that she has never had anyone call her before to ask why the Klonopin was too strong. Always the opposite. And she said that they don't know that much about gluten reactions yet. Is this true ? I saw the NIH report on celiac and there was a long list of celiac related complaints.

Any comments would be appreciated. Thanks, Marcia

Mommida, I got your pm, but I'm not that savy yet and lost it. But, that was interesting about the gall bladder. When they did my surgery they found my gall bladder close to my stomach. So, I couldn't tell which was causing the pain. My scar is in the middle of my rib cage. Thanks for replying though ...

[Guest nini]

Sounds like Celiac to me. I was on tons of medications before my dx, and after about a year of the gluten-free diet I was able to go off of almost all of my medications. I still take one for fibromyalgia pain and a low doseage blood pressure medicine but other than that, drug free. I had seizures, fibromyalgia, reflux, diarrhea, vomiting, fatigue, hypoglycemia, anemia, depression/anxiety disorders... on and on... even had several miscarriages and an extremely complicated pregnacy because of this. Since going gluten-free I have lost over 100 pounds and am so much healthier than I was before.

You don't need a Dr.s confirmation, positive dietary response is confirmation enough. You may have some other food intolerances that you can figure out on your own by process of elimination... good luck with it all and welcome to the board.

did you get my e-mail?

[marciab]

Hi Nini,

Thanks so much for your reply. I'm sorry, but I didn't get your email though. Not unless you are also mommida ...

This is all soooooo unbelievable. I can't believe we are not being made more aware of this. I'm in shock!!!

I still have that little bit of doubt that this is real though.

I have been disabled for 16 years with CFIDS / FM. This is the first time in all those years that I have been seizure free. And now soon to be med free. I can't wait to see what happens next. Maybe I will get my energy back.

Congratulations on recovering from your medical problems. That is so encouraging. Are you able to function ? I have been at a very low functional level for 16 years. I have been resting 16 - 20 hours a day now for several years.

Thanks to all on this board. I could not have done this without you. Sad to say but obviously, we can't count on the medical profession to help us with celiac ...

Sincerely ... Marcia

[Guest nini]

yep I'm functional now. There used to be times when I couldn't get off the couch for months at at time other than to go to the bathroom... now, I hardly ever see the couch! I haven't had any signs at all of the depression or anxiety that plagued me for years. I do still have lingering pain from fibromyalgia, but at least I am able to be active so that makes the fibro better.

[evie]

[ nini; I understand you can send Delphi reports to people who ask? would you send me that information, please? I enjoy reading yourposts on this Good forum. thank you so very much.

evie

[mommida]

A great source of information is the gluten file, celiac3270 posted it a while back.

Marcia, you will get to be a pro at this site soon.

Laura

[marciab]

Nini,

Thanks again for replying. We've had some of the same experiences with gluten. I am not feeling the spikes in my blood sugar I used to either. Or the hyperactivity.

I can hardly wait to get off this Klonopin and see what happens. I have the feeling that this med is a big part of the reason I am so tired during the day. Klonopin has so many side effects.

Laura,

Thanks. Do I do a search on the gluten file ? I wonder how common these non digestive problems are.

Marcia

[Mabc]

Hi Marcia,

Your story is a lot like mine. I too have had seizures though lately all I have is the feeling that I'm about to have one - my muscles/nerves (?) feel like they are at their threshold. I have been disabled by CFIDS since 1998 and I've learned I can't get help from docs - though mine is nice, he just has no ideas. He never recommends anything, so I decided to do the celiac diet. I have come to realize I've got to try to find the answer myself.

I'm not able to add any information for you cause I just started but I'm rooting for you. I think for some things I have to reprogram myself to trust my body's response and stop looking for the doctor to validate it. That's hard though. Do you have trouble standing and walking? My muscles feel like noodles. There's just not enough energy to keep them contracted.

Melodi

[marciab]

Melodi,

Sorry to hear that you have CFIDS too. How long have you been on the celiac diet ?

My legs give out on me too. But, not as bad now as when I first got sick. I use the carts at Walmart, etc. when I need to. I have problems standing too. I feel like I am going to pass out.

I am having a problem reprogramming myself not to look for validation from a doctor. And I still have that tape playing in my head that there is "no cure for CFIDS / FM and I will probably be sick for the rest of my life". It is really hard for me to shut something like that off.

I am so happy to have found others on the board who have been where I am.

Marcia

[Mabc]

Marcia,

I've been gluten free for about 8 days, but I slipped up somewhere in the middle...so.

Yes, I have that exact same tape playing in my head!! However, I'm starting to try to reprogram myself that even though I may not have power over the big picture cause I don't even know for sure what is broken in my body, I do have power to do what I CAN do that may have a positive impact on my health. I figure if I'm able to improve 10% that that is better than nothing! However, I often get discouraged because lots of times I do something healthful thinking it'll help and I just seem to get worse!

It has taken me 8 years of seeking support from doctors and not getting it, even though my current doctor is very nice, he just doesn't offer me anything. I think they either want to give surgery or drugs and neither of those cures what we have so they don't know what to do with us. I'm extremely sensitive to most medicines so I don't take any except caffeine for headaches and to help the severe fatigue.

Sorry about your legs. That is the most frustrating part for me. I also use the wheelchairs and carry one in my trunk.

Did you figure out any other foods on the elimination diet that you were intolerant of? I've started that diet many times only to bail out - waah. How awesome you could stick to it! How did you do that? I know it's hard.

Melodi

[marciab]

Melodi,

I will settle for a 10% improvement too. This diet is making me feel empowered, but I'm trying not to get too excited. I had a busy weekend (my daughter graduated high school) and was jerking a little Saturday and Sunday. But I also ate chocolate and red meat and wore makeup, etc. I've stopped them again to see if they are the problem. Today has been much better.

I am not as self disciplined as I am sensitive to foods. My stomach just gave out on me about 3 years ago. I'll have gas, "C", "D", heartburn, reflux, horrible abdominal pains, etc. if I eat any forbidden foods.

I figured out through the elimination diet that soy causes immediate stomach cramps, chocolate was causing reflux, but only after a couple of days, garlic caused severe gas pains, onions too. ETC.

This diet would be a lot harder if I didn't get the feedback from my stomach. So far, I can keep going back to my safe foods and be pain free. I just hope they don't change.

Hang in there with the diet. Have you seen any improvements yet ? Are you having stomach problems ?

Marcia

[marciab]

AM I brain dead or what ? I thought the seizures were from gluten, but now I am not so sure. I see where multiple chemical sensitivities and food allergies and sensitivities can cause a slue of problems too. And I definitely have those.

How do I know what is causing this ? It's not like I faint or go into anaphylaxis. BUT, even my daughter who does go into anaphylaxis from time to time can't count on having the same reaction every time. Her last episode was due to the foilage at a camp ground. And it was her first time reacting that way.

This is so frustrating not knowing what is causing all this. I need a black and white answer, but there doesn't appear to be one.

Anyone know where I can get a bubble cheap ?

Sorry, I just needed to vent !!! Thanks for being here ... Marcia

[Mabc]

How frustrating for you! I'm sorry I have no answers. I'm so new to this. I have so many weird symptoms and it's frustrating to not know who the enemies are. Hang in there. Maybe someone will have some answers for you.

Melodi

[marciab]

Hi Melodi,

Thanks for replying. I was in rare form yesterday when I was typing that. I have been a little jittery since Saturday and I wasn't taking it well. But , I seem to be ok. I didn't have to increase my Klonopin.

What kind of symptoms are you having ?

I am really curious about how celiac / food allergies and intolerances and CFIDS / FM are related. I don't know if I have always been a celiac and my problems are the result of untreated celiac OR if the CFIDS / FM triggered gluten intolerance (celiac ? ) and other food allergies / intolerances.

Not that it matters, I will stay on this diet, but I really would like to know what I could expect out of all this. From what I have read, and this is where the brain dead part comes in, the healing is all up to the individual. Because it depends on what kind of permanent damage has been done.

I was so pleased to see where Nini got her energy back. That would be sooo cool !! I did notice that after intentionly eating plain white macaroni, I slept for 2 days straight. So, we'll see.

ON a lighter note, I just learned how to use the little faces to the left.

Marcia