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Spartan89

Celiac And Lyme-So Confused About What's Causing My Symptoms!

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Ok, I apologize ahead of time if this gets long or confusing! I was so excited to find this forum, because I have been sick for so long.

Basically, I was diagnosed with Lyme disease in July after being sick for 2 years. My symptoms include:

-An episode of fainting in the shower after eating 3 pieces of pizza. After fainting I had diarrhea, panic, and sweating. This was the first symptom I had, I felt normal prior. I went to the hospital and was told I had mono. After that episode I haven't felt normal since

-Shortness of breath

-Burping, up to 75 times/day. Sometimes acid comes up, and burping will relieve the shortness of breathe

-A stomachache every 1 to 3 days with diarrhea and constipation in between. Frequent nausea

-A "surge" feeling that suddenly shoots through my body and makes me gasp for breath

-heart palpitations

-Vision feeling off, like depth perception isn't right. Sensitivity to light

-Panic, anxiety and depression completely uncharacteristic of me. Would often onset after eating. The depression would strike suddenly and go away quickly

-Trouble sleeping; often wake up an hour after falling asleep in a panic

-Feeling like it's hard to talk/form words; feeling out of it

-Sinus headaches

-Hunger pains/gnawing in stomach after eating

-Feeling like my body is exhausted while my mind is wide awake. I often feel like my eyes want to close even though I'm not sleepy. This makes it almost impossible to drive

-Freezing cold hands and feet, especially after eating

-Sudden extreme fatigue, like I can't even move. It comes on without warning and then will usually disappear suddenly several hours later

-A vague sense of hopelessness that strikes suddenly and goes away quickly

-Trouble keeping weight on: 5' tall and 92lbs

-An active mono infection that lasted two years

I've had other symptoms on occasion too, but I don't want this to turn into a novel ;)

After I tested positive for Lyme, I went on antibiotics for a month and a half. I didn't feel any better though; if anything I felt worse. I was off them for a month and continued to feel worse than before. At my most recent doctor appt, I was told I have Celiac based on a saliva test. I'm not sure how reliable that is....I had never heard of a saliva test for Celiac. On my lab results it looks like this:

Gliadin Ab, SIgA (Saliva)- 16 (Positive = >15)

Also, I had occult blood in my stool sample, and my Total Intestinal SIgA was 39 (Low = <400)

i really have no idea what these tests mean, but my doctor says that I have celiac based on them. If I really do have it, I'm wondering how many of my symptoms were caused by it rather than the Lyme. I never had classic Lyme symptoms- no joint pain, swelling, or swollen lymph nodes. I'm kind of wondering if maybe I was just carrying the bacteria (which a lot of people do without getting sick) and actually suffering from celiac all along. I have had severe gassy stomachaches with alternating diarrhea/constipation since about 10 years old.

I'm just so torn about what to do! I don't want to kill my stomach anymore with strong antibiotics if I don't need them. But, I also don't want to not take them if it is Lyme causing my symptoms. I just started a gluten free diet 3 days ago, so it's a bit soon to know if that will help. I'm also finishing up my current prescription of Flagyl just to be safe. Any thoughts? Can celiac cause my symptoms, and did I actually have reliable tests done? Thanks for reading through all that, I know it was long!

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When I read your story my heart went out to you as I also have dealt with the same problems of lymes mono and the gluten problem. Many of the problems you have had can also be caused by the mono, even if you are not positive the virus hangs on for quite some time. I have been gluten free now for over 2 years which has helped so much . I was on antibiotics for 6 months, but many times I wonder if I needed to be. There is so much controvercy about lymes and also about mono. Many people disagree with each other, many doctors disagree with each other, very hard to be the person sick and not get straight answers. I still go through what I call flares (which I beleive myself is the epstein barr virus (mono)) or maybe its what I have been left with from all, but I am much better then I was 3 years ago better then 2 years ago and even better then last year. If you need to talk more on all of this let me know I will send you my email addy. I know how in depth it can get with such strange symptoms and trying to figure out what causes what. I can tell you that getting rid of gluten and dairy for me has gotten rid of stomach issues,( if no accidents happen with either) I am a very sensitive person and what many people can eat I can't, like the cereals put out by the Big companies, chex, fruity pebbles, etc make me very sick, I try to stay away from too much processed foods and am very careful in my own kitchen as I am the only one gluten free in my house. One thing I do beleive in is the stonger you can get your immune system the better it can keep lyme, and epstein barr in remission so going gluten free has really been helping me, I still have a long ways to go and have started strongly to add vitamins for that purpose, right now I have fought for 4 years trying to build up my vit D for some reason it never wants to go up.

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I had a LOT of your same symptoms from just Celiac.

Eat gluten-free and make sure you aren't getting trace amounts from cutting boards, ooden spoons, your can opener.

Get a new toothbrush, colander, and get rid of any scratched non stick cookware.

Try to stay with whole foods (fruits, veggies, eggs,rice, dairy,and non processed meats)at first.

It will take some time to heal, but you will feel better.

I have heard of false negative tests, but never a false positive. If your Dr. says you have Celiac go gluten-free.

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Thank you all! I'm just so tired of feeling sick and not myself. It's hard to make sense when I describe my symptoms, since a lot of it is just a general feeling of being unwell and not myself. I really can't wait to see if the gluten free diet helps...I'm a college student and I absolutely hate having to sit at home feeling ill all the time.

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There's a Lyme thread somewhere in this board with tons of info. Search for it.

Good luck!

Here it is:

It's several years old, but I feel still relevant. Feel free to PM the members in this thread. They would be glad to speak to you :) !

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Hey! I know this is a really old post but was wondering if you ever found out what the cause of your symptoms were? Lyme? Gluten problem? I'm getting ready to embark on a gluten free trial...I think we may have shared some common symptoms and just wanted to see if going gluten free helped you.

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