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Newbie Needs Answers

badgerette

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badgerette Rookie
badgerette
Posted

Hi there. I have a variety of health issues including interstitial cystitis, raynaud's, TMJ, joint pain etc.. and recently, I started feeling very poorly; some days, I would have no energy. I also noticed that on those no-energy days, I often felt a sort of churning in my intestines. I felt like they were related. I am in the process of moving across the state right now, so going to doctors is a little complicated. I also don't have a lot of money. So someone told me to try a gluten free diet and, desperately, I have done that. I started 4 weeks ago. I felt better right away, but I have had very bad days, too.

I am wondering if on those bad days, I had consumed something with gluten unintentionally. While traveling out of state, I ate at a bakery/cafe. I had a sandwich on gluten free bread, but I was not careful in asking if there could be cross-contamination. The next day, I felt terrible- no energy, weird repeated bowel movements throughout the day, anxiety, etc. I was very careful for the rest of the trip and was okay, but yesterday, I ate out again. I had sushi, but one of the sushi contained kampyo, which I now think may have had soy sauce in it. Today, it's the same as the last time. No energy, crampy, pooping not-so-nice poops a lot. The symptoms seem to onset immediately after I eat a meal, somewhere between 10-24 hours after the suspected gluten ingestion. Does this sound like gluten sensitivity or something else?

I have talked to a general doctor, but I didn't mention the intestinal upset so much because it wasn't a huge problem before. She just told me to take a vit D supplement because a blood test showed that was the only thing I was low on (hello from the North, where winter is quite long!). She did also give me a referral so that when I move, I can get my blood tested again and get tested for gluten intolerance. I am scared to death of eating gluten again at this point, and I read somewhere on here that you have to eat it for several months before getting a test?!?! Gulp.

Anyway.. if anyone has any comments or advice, I'd love to hear it. I am getting very frustrated and depressed about my ill health lately.

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Caremate Newbie
Caremate
Posted

Hi, I was just recently diagnosed with Celic (about 3 weeks ago) I have been gluten free now for the most part of those 3 weeks. I saw a nutritionist and she told me that it takes a full 6 weeks to feel better after being on a gluten free diet (100%) she also told me that if I just went gluten free without being diagnosed first that would cause problems in the diagnoses. You should go see a dr and get tested if you havn't done so because once you are gluten free for a while it won't show up in a biopsy at all.

I don't know what advice I can really give since I've only just started my new gluten free diet and I have yet to feel better. Best of luck to you!

RiceGuy Collaborator
RiceGuy
Posted

The symptoms you describe certainly do sound like a sensitivity to gluten.

Eating out is often problematic, though some say that getting to know a particular restaurant, and the cooks, manager, etc can help a lot.

Testing for gluten sensitivity or Celiac typically does require some weeks or months of gluten ingestion to get some chance of accuracy in the test results. Some opt to forgo "official" testing, and just remain gluten-free, being assured by the improvement in health that they've made the right decision. Others feel they need/want the tests to reinforce their resolve to never eat gluten again, or prove to family/friends, etc. The choice is ultimately up to you. But do keep in mind that accuracy is somewhat lacking, and in fact a gluten-free diet is the best test there is. If you feel better without gluten in your diet, that trumps any test a doctor can do.

In the mean time, there are some things you can do to lessen some of those other health issues you mention. For instance, get yourself a decent co-enzyme B-complex supplement, zinc chelate/picolinate, and magnesium citrate. Also glucosamine, curcumin, and maybe some omega-3s such as flax/krill/fish oil. A sublingual methylcobalamin B12 5mg tablet would probably also be helpful. These should help with TMJ, Raynaud's, joint pain, energy, and numerous other things.

I'm sure others will have helpful advice for you. Welcome to the board!

badgerette Rookie
badgerette
Posted
  • Author

Hi, I was just recently diagnosed with Celic (about 3 weeks ago) I have been gluten free now for the most part of those 3 weeks. I saw a nutritionist and she told me that it takes a full 6 weeks to feel better after being on a gluten free diet (100%) she also told me that if I just went gluten free without being diagnosed first that would cause problems in the diagnoses. You should go see a dr and get tested if you havn't done so because once you are gluten free for a while it won't show up in a biopsy at all.

I don't know what advice I can really give since I've only just started my new gluten free diet and I have yet to feel better. Best of luck to you!

Thanks! A friend told me to go 6 weeks too. It's difficult since I feel like I may have had accidental ingestion of gluten during my 4 elapsed weeks, but after week 5 or 6, I am going to try eating a piece of bread or something and see if I feel miserable afterward..

badgerette Rookie
badgerette
Posted
  • Author

The symptoms you describe certainly do sound like a sensitivity to gluten.

Eating out is often problematic, though some say that getting to know a particular restaurant, and the cooks, manager, etc can help a lot.

Testing for gluten sensitivity or Celiac typically does require some weeks or months of gluten ingestion to get some chance of accuracy in the test results. Some opt to forgo "official" testing, and just remain gluten-free, being assured by the improvement in health that they've made the right decision. Others feel they need/want the tests to reinforce their resolve to never eat gluten again, or prove to family/friends, etc. The choice is ultimately up to you. But do keep in mind that accuracy is somewhat lacking, and in fact a gluten-free diet is the best test there is. If you feel better without gluten in your diet, that trumps any test a doctor can do.

In the mean time, there are some things you can do to lessen some of those other health issues you mention. For instance, get yourself a decent co-enzyme B-complex supplement, zinc chelate/picolinate, and magnesium citrate. Also glucosamine, curcumin, and maybe some omega-3s such as flax/krill/fish oil. A sublingual methylcobalamin B12 5mg tablet would probably also be helpful. These should help with TMJ, Raynaud's, joint pain, energy, and numerous other things.

I'm sure others will have helpful advice for you. Welcome to the board!

Thank you! I am thinking I just may forgo the official diagnosis if my self-testing does turn out to indicate a gluten sensitivity. I do not want to go through 3 months of feeling like garbage just to have another test...

Thanks for all the advice on supplements, too!

Caremate Newbie
Caremate
Posted

Thanks! A friend told me to go 6 weeks too. It's difficult since I feel like I may have had accidental ingestion of gluten during my 4 elapsed weeks, but after week 5 or 6, I am going to try eating a piece of bread or something and see if I feel miserable afterward..

I'm struggling to with the accidental ingestion as well especially living in a house with 4 others who are not gluten free! Our kitchen is always covered in crumbs an I'm scared to touch so much. It's a battle I've just started to defeat and I can't wait to get into the groove of things so I can start feeling better already! Good luck!

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