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marie75

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marie75 Newbie
marie75
Posted

Hi all,

This is my first time posting. I've been having some atypical symptoms, most prominently a case of cystitis that wouldn't clear up. I was having terrible problems with urinary frequency, urgency and excessive urination. I also had an extremely uncomfortable burning sensation that was hard to pin down, not sure if it was bladder or lower intestine. It was just below the belly button, but radiated to the left and right sides as well. After a few rounds of antibiotics didn't clear it up, my doctor suggested there might be a food allergy and/or gluten intolerance. I did a urine test for intestinal permeability, and the results showed that I had malabsorption. My doctor diagnosed me with having a gluten intolerance, and in the mean time I had removed gluten from my diet and saw a great improvement for my urinary sypmtoms. I also saw an improvement with concentration, memory, fatigue and depression. I'm at a crossroads now where I'd like to get the blood test for Celiac antibodies (celiac disease runs in my family, I have 5 cousins who are diagnosed). However, I've been off gluten for 3.5 weeks now, and I'm wondering how long I'll need to eat gluten to get accurate results, and if I should even bother putting myself through that. If symptoms return, does that mean my body is producing anti-bodies? Also, if you have a gluten intolerance rather than Celiac, are you still at risk for similar auto-immune problems? Any advice would be really appreciated! Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you feel you need to be tested then go back on gluten for at least 2 to 3 months. If your symptoms return after you add gluten back in that is pretty diagnostic in itself. Be aware that there are false negatives on testing, with both blood and biopsy. It is how your body reacts that counts the most. With a strong family history of celiac and your good results on the diet chances are you do need to be gluten free.

marie75 Newbie
marie75
Posted
  • Author

If you feel you need to be tested then go back on gluten for at least 2 to 3 months. If your symptoms return after you add gluten back in that is pretty diagnostic in itself. Be aware that there are false negatives on testing, with both blood and biopsy. It is how your body reacts that counts the most. With a strong family history of celiac and your good results on the diet chances are you do need to be gluten free.

Hi and thanks for your reply! Wow, 2-3 months, I don't think I want to do that. My doctor suggested 2 weeks since I haven't been off gluten for that long. Is that possible?

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi and thanks for your reply! Wow, 2-3 months, I don't think I want to do that. My doctor suggested 2 weeks since I haven't been off gluten for that long. Is that possible?

It could be long enough since you have only been gluten free for under a month but it could also be a false negative. The challenge may tell you what you really need to know if you react badly to it.

marie75 Newbie
marie75
Posted
  • Author

It could be long enough since you have only been gluten free for under a month but it could also be a false negative. The challenge may tell you what you really need to know if you react badly to it.

Thanks, I appreciate the advice! :)

eatmeat4good Enthusiast
eatmeat4good
Posted

I want to speak to your problem with cystitis, and burning pain.

I have had recurrent intermittent cystitis all my life.

Often took antibiotics on a daily basis "to control the bacteria".

Often there was no bacteria when my urine was tested.

It was very surprising to find that all of these symptoms disappeared when I went gluten free 4 months ago.

I now believe it was related to the inflammation caused by gluten and malabsorption of even fluids.

I often had symptoms of dehydration.

Since this is not a common symptom of Celiac, or gluten intolerance, I did not expect it to improve.

However, it is completely gone.

Just wanted to give you some hope on that issue because it has been a great relief to me.

I hope it is for you too.

marie75 Newbie
marie75
Posted
  • Author

I want to speak to your problem with cystitis, and burning pain.

I have had recurrent intermittent cystitis all my life.

Often took antibiotics on a daily basis "to control the bacteria".

Often there was no bacteria when my urine was tested.

It was very surprising to find that all of these symptoms disappeared when I went gluten free 4 months ago.

I now believe it was related to the inflammation caused by gluten and malabsorption of even fluids.

I often had symptoms of dehydration.

Since this is not a common symptom of Celiac, or gluten intolerance, I did not expect it to improve.

However, it is completely gone.

Just wanted to give you some hope on that issue because it has been a great relief to me.

I hope it is for you too.

Thanks for that! It's great to hear that I'm not alone in having symptoms of cystitis. There doesn't seem to be much reported about that particular symptom. I did see quite a lot of improvement (I'd say about 90% better) with the removal of gluten, so I believe in time that should clear up altogether. I'm glad that it did for you. Quick question, do you have a non-celiac gluten intolerance or did you get a diagnosis for Celiac?

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salexander421 Enthusiast
salexander421
Posted

I'm not at all an expert but I do know it can take adults up to 2 years to completely heal. If you are going to do the gluten challenge and get tested I would do it sooner rather than later, the longer you're gluten free the more your body is going to heal.

marie75 Newbie
marie75
Posted
  • Author

I'm not at all an expert but I do know it can take adults up to 2 years to completely heal. If you are going to do the gluten challenge and get tested I would do it sooner rather than later, the longer you're gluten free the more your body is going to heal.

Thanks! That's pretty much what I figure, it's now or never. I think I'm going to give it a try and see how it goes. I can always abandon ship and go back to gluten free if it gets too tough.

  • 2 weeks later...
marie75 Newbie
marie75
Posted
  • Author

Thanks! That's pretty much what I figure, it's now or never. I think I'm going to give it a try and see how it goes. I can always abandon ship and go back to gluten free if it gets too tough.

N.B. To anyone following this thread, I subsequently tried a gluten challenge and lasted about 3 days. Suffered anxiety, panic attacks, depression, difficulty concentrating, itchy ears, acne, and a return of the cystitis-like symptoms. I decided to give it up and just live with not knowing whether it's a non-Celiac gluten sensitivity or actually Celiac. The result is still the same, I still need to avoid gluten at all costs! Thanks to all who posted.

eatmeat4good Enthusiast
eatmeat4good
Posted

Thanks for that! It's great to hear that I'm not alone in having symptoms of cystitis. There doesn't seem to be much reported about that particular symptom. I did see quite a lot of improvement (I'd say about 90% better) with the removal of gluten, so I believe in time that should clear up altogether. I'm glad that it did for you. Quick question, do you have a non-celiac gluten intolerance or did you get a diagnosis for Celiac?

Sorry I missed your question. I am certainly Celiac but without testing. I have Dermatitis Herpetiformis and have had it for 7 years. No Dermatologist would biopsy...and I tried several. I have to be very strictly gluten free or my sores flare. Hope you are doing well.

eatmeat4good Enthusiast
eatmeat4good
Posted

Thank you for posting that result.

That is precisely why I don't advocate testing. By the time you realize what you need to be tested for, you have already found your answer. My Dr. said, "Why would I tell you to eat gluten so I can test you and then tell you that you should stay off of gluten? The gluten elimination and challenge is 100% accurate."

Thank God for voices of reason.

Congratulations on not having to feel so terrible anymore.

I'm really happy for you!

marie75 Newbie
marie75
Posted
  • Author

Thank you for posting that result.

That is precisely why I don't advocate testing. By the time you realize what you need to be tested for, you have already found your answer. My Dr. said, "Why would I tell you to eat gluten so I can test you and then tell you that you should stay off of gluten? The gluten elimination and challenge is 100% accurate."

Thank God for voices of reason.

Congratulations on not having to feel so terrible anymore.

I'm really happy for you!

Thanks eatmeat4good! I appreciate your support. Just wondering, how long did it take for your cystitis symptoms to clear up? I've noticed significant improvement, but still not 100% better yet. It's only been 10 days since I ended the gluten challenge, but I still have intermittent symptoms. I've been keeping a food journal, but it's hard to find a pattern. Right now I'm doing a total elimination diet, so basically just eating meat, vegetables, corn and rice based things (some fruit too).

eatmeat4good Enthusiast
eatmeat4good
Posted

I would say it took about a month not to have the bladder spasms at all anymore. I was noticing it less and less and then didn't have it at all. I thought that is the weirdest thing if this is related to gluten too! But guess what? It is totally related to gluten. For me anyway.

Taking fish oil and vitamin C for their anti-inflammatory properties helped a lot too. I think. :)

marie75 Newbie
marie75
Posted
  • Author

I would say it took about a month not to have the bladder spasms at all anymore. I was noticing it less and less and then didn't have it at all. I thought that is the weirdest thing if this is related to gluten too! But guess what? It is totally related to gluten. For me anyway.

Taking fish oil and vitamin C for their anti-inflammatory properties helped a lot too. I think. :)

Oh cool, I'll have to give the fish oil a try. I'm taking a good hypoallergenic multi right now that has plenty of C in it. It's a lot better now, but still having a terrible burning sensation in my abdomen that sort of comes and goes without a pattern that I can tell. Ugh. I think dairy and eggs are a problem for me all of a sudden, and caffeine seems to make things worse too. Hopefully things will clear up the rest of the way soon. Thanks!

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