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New Here -- Question About Symptoms

KikiB

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KikiB Explorer
KikiB
Posted

Hi everyone, I had mono back in April. A couple of months after the mono, I would have days of terrible fatigue and muscle weakness -- mostly in my legs. Once in awhile, the arms. It would usually resolve after sleeping overnight. I couldn't figure out the cause but then it seemed it was tied into eating. But it was confusing because I couldn't figure out a pattern.

Then I noticed that I would get queasy after eating things I have eaten my whole life. For example, when I was off work with the mono, I ate a lot of organic hamburgers for the protein, with buns. But now the hamburgers make me queasy and bring on the fatigue and muscle weakness, my homemade pizza, takeout pizza, waffles at iHop, the mexican restaurant I've been eating at for 8 years... Then I had a really bad case after eating my Bisquick coffee cake which I make every weekend. That episode made me miss 3 days of work.

Nausea, fatigue, muscle weakness. I've been constipated for about 10 years, and take Dr. Schultz Formula No. 1 for that. Sometimes I have issues of D. I figured it's just because my digestive system has never quite been right.

My regular doctor sent me to a neurologist for the muscle weakness -- he hasn't found anything. Then she sent me to a rheumatologist. The rheumtologist took 8 viles of blood for testing and I know she is testing me for Celiac. I have been gluten free (to the best of my knowledge -- it seems pretty tricky) for 6 days (since the blood tests). I feel a little better, but not a lot, if that makes sense. I get my test results on Wednesday.

I should probably add that I also have asthma, which I believe is an autoimmune disease.

Are these normal symptoms for Celiac? Would it just start after mono? I have been queasy on and off for at least 20 years. The fatigue is not regular, it's debilitating, and I have to go right to bed -- and I can't bear the muscle weakness.

Thanks for any information you can give me.

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psawyer Proficient
psawyer
Posted

Welcome!

Celiac disease has a genetic factor, but also requires a trigger to activate. An infectious disease can be the trigger, and mono has been cited by a number of members here over the years.

Your symptoms are consistent with celiac disease, but could have other causes.

mushroom Proficient
mushroom
Posted

I would caution you that if your tests come back positive for celiac they will probably want to do an endoscopy with biopsy to confirm the diagnosis. For this test you should still be eating gluten or you risk a false negative on the biopsy, especially if you have to wait a week or two for it.

KikiB Explorer
KikiB
Posted
  • Author

Oh dear. I didn't realize you can't be gluten free for the endoscopy. I thought that test was just to determine damage to the intestine.

Doesn't it take 8 to 12 weeks to be rid of gluten? It's only been 6 days for me. How much gluten would I need to consume to keep the test accurate?

I really don't look forward to having another episode. :(

kittty Contributor
kittty
Posted

the mexican restaurant I've been eating at for 8 years...

Were you eating flour tortillas and/or other gluten foods at the Mexican restaurant? My favorite Mexican place was one of the few places where I didn't get a reaction, which later made sense because they only have corn tortillas and don't put gluten in anything.

I'm just wondering in case it doesn't fit the gluten pattern. But your symptoms do sound celiac. I never had the muscle weakness, but muscle aches and cramps were frequent.

Is it possible that some of your symptoms are caused by lingering mono? A friend of mine had mono when we were in high school, and she was fatigued and achy for many months after. She missed almost a whole year of school.

KikiB Explorer
KikiB
Posted
  • Author

Were you eating flour tortillas and/or other gluten foods at the Mexican restaurant? My favorite Mexican place was one of the few places where I didn't get a reaction, which later made sense because they only have corn tortillas and don't put gluten in anything.

I'm just wondering in case it doesn't fit the gluten pattern. But your symptoms do sound celiac. I never had the muscle weakness, but muscle aches and cramps were frequent.

Is it possible that some of your symptoms are caused by lingering mono? A friend of mine had mono when we were in high school, and she was fatigued and achy for many months after. She missed almost a whole year of school.

At the Mexican restaurant I always get chicken tacos with a side of rice and sour cream.

The muscle weakness has gotten worse consistently, and now familiar foods trigger it along with the fatigue. I think that's why she's testing for Celiac.

mushroom Proficient
mushroom
Posted

Oh dear. I didn't realize you can't be gluten free for the endoscopy. I thought that test was just to determine damage to the intestine.

Doesn't it take 8 to 12 weeks to be rid of gluten? It's only been 6 days for me. How much gluten would I need to consume to keep the test accurate?

I really don't look forward to having another episode. :(

While it takes a long time to fully heal from the effects of gluten, healing does begin to take place as soon as it is withdrawn. Depending on how much damage you have in your intestine, that might be just enough to take you out of the positive category on the lab results. It is recommended that you keep eating a normal gluten diet. The six days so far should not make any difference so long as you resume the gluten.

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KikiB Explorer
KikiB
Posted
  • Author

While it takes a long time to fully heal from the effects of gluten, healing does begin to take place as soon as it is withdrawn. Depending on how much damage you have in your intestine, that might be just enough to take you out of the positive category on the lab results. It is recommended that you keep eating a normal gluten diet. The six days so far should not make any difference so long as you resume the gluten.

Thank you for the information. Would it be ok if I only ate gluten in my last meal of the day? That way if I get sick, I'm going to bed anyway. Would that be enough gluten?

GottaSki Mentor
GottaSki
Posted

Welcome Kiki!

Your symptoms could be caused by Celiac Disease. You do need to resume eating gluten until all testing including endoscopy are complete. Some Celiac Centers suggest one slice of bread containing gluten per day is enough. I have read that a person needs to ingest up to four slices, but I'd go with what the Celiac Centers - maybe a sandwich with two slices, but you don't need to overdo.

Once you are able to remove all gluten it may take time for you to feel better. That you feel slightly better after six days is a very good sign.

So continue to eat gluten until you are sure you are through with testing, then either way remove ALL gluten for at least three months. There are no medical tests for Non-Celiac Gluten Intolerance. If your tests are negative, you still need to remove gluten as this is the only test for NCGI.

Good Luck - I hope adding gluten back in for a few weeks isn't too rough on you.

GottaSki Mentor
GottaSki
Posted

Thank you for the information. Would it be ok if I only ate gluten in my last meal of the day? That way if I get sick, I'm going to bed anyway. Would that be enough gluten?

I think this is a good idea. Just make sure you don't miss days. Gluten-lite can even reduce the chances of positive blood work and biopsies.

KikiB Explorer
KikiB
Posted
  • Author

I think this is a good idea. Just make sure you don't miss days. Gluten-lite can even reduce the chances of positive blood work and biopsies.

Thanks, Lisa. It's funny that after such a short period of time I find the thought of eating gluten scary.

GottaSki Mentor
GottaSki
Posted

Thanks, Lisa. It's funny that after such a short period of time I find the thought of eating gluten scary.

This is normal and will help make your transition to gluten-free a bit less stressful after testing is complete. Those that have no reactions often have a very difficult time believing that they really need to remove ALL gluten.

Hang in there :)

1desperateladysaved Proficient
1desperateladysaved
Posted

I did sight mono at 19 years old as being a time when my symptoms became noticeable and were new. I mention it in my blog on this forum. "Back From Nowhere." is the entry.

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