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Symptoms Went And Then Returned
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Hello all. I was diagnosed by biopsy in October 2010. I have been gluten free since then. After going gluten free I experienced significant vertigo and dizziness, that went too. Everything was going along marvellously and I developed a rather bad cold about a week ago. The cold seems to have gone, though I am now, again, extremely fatigued, feeling dizzy, headaches, slight vertigo, pretty much all the symptoms I had before diagnosis (and which continued for a couple of months).

Is it to be expected that these symptoms will return now and again until the gluten is entirely out of my system? I can't bear the thought of going back to where I was late last year; I couldn't even work then and I'm frightened that it's 'all come back'. I am pretty strict with my diet, but maybe some gluten accidentally got in. If it did and it was a small bit, would it make me feel this bad again?

Thank you for listening and I look forward to hearing from you.

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Hello all. I was diagnosed by biopsy in October 2010. I have been gluten free since then. After going gluten free I experienced significant vertigo and dizziness, that went too. Everything was going along marvellously and I developed a rather bad cold about a week ago. The cold seems to have gone, though I am now, again, extremely fatigued, feeling dizzy, headaches, slight vertigo, pretty much all the symptoms I had before diagnosis (and which continued for a couple of months).

Is it to be expected that these symptoms will return now and again until the gluten is entirely out of my system? I can't bear the thought of going back to where I was late last year; I couldn't even work then and I'm frightened that it's 'all come back'. I am pretty strict with my diet, but maybe some gluten accidentally got in. If it did and it was a small bit, would it make me feel this bad again?

Thank you for listening and I look forward to hearing from you.

If some of your symptoms are coming back I think it could mean you might be getting a little gluten somewhere. Sounds like your body is trying to tell you something. We tend to get more sensitive to gluten when it's out of our diets for a while. You might be getting trace amounts and not know it. I would recheck all your vitamins (vitamins could have barley in them and still claim they are gluten free), medicines, and even processed gluten free foods can have trace amounts of gluten.

Also, if you haven't started one already, a food journal is really helpful. I would start documenting your reactions along with the foods your eating. What helped me is going on a wholefoods diet( completely natural gluten free foods -fresh meats, veggies and fruit and then when I felt better I would add an item to my diet once a week. I know it's a pain, but since sometimes we don't react right away and it's hard to tell where we are getting the gluten from. I now know I react the next day. You'll start to see a pattern.

Keep reading these forums. I don't think I would have got better if it wasn't for this forum. Everyone is so helpful and they know so much more then any of the doctors do. And just because something says it's gluten free doesn't always mean it's gluten free. I learned this the hard way. When calling companies always ask if they are made on the same lines that gluten products are made on. I can't eat any products that are made on shared lines. My reactions come right back. Hang in there!

I hope you are feeling better soon! :)

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Hi there, thanks so much for your reply. It's talked me off the ledge as it were! I think I got a bit 'cocky' and started feeling great and then buying loads of ready made meals that professed to be gluten free but were full of additives and preseratives. I felt my best when I was eating plain food.

Can you recommend vitamin companies that are completely trustworthy? I live in England, but I'm sure most people can ship overseas.

Thanks again, these links from the forum make me get a grip!

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Was there anything you took for the cold or ate or drank when you were sick that you weren't before? Also as the previous poster stated we can become more senstive to trace amounts after we have been gluten free for a while.

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Was there anything you took for the cold or ate or drank when you were sick that you weren't before? Also as the previous poster stated we can become more senstive to trace amounts after we have been gluten free for a while.

Hi there, no I just took paracetamol. Looking back, I was so excited about the ability to buy gluten free products, that I think I just stuffed myself with all the crisps, cakes, curries etc that said they were gluten free but were full of additives. I'm finding it a bit hard I guess to really adjust my eating lifestyle and I need to eat plain food. It's a huge learning curve, but I'm so determined to be well that I'll do it. Thank you for taking the time to reply.

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Hi there, thanks so much for your reply. It's talked me off the ledge as it were! I think I got a bit 'cocky' and started feeling great and then buying loads of ready made meals that professed to be gluten free but were full of additives and preseratives. I felt my best when I was eating plain food.

Can you recommend vitamin companies that are completely trustworthy? I live in England, but I'm sure most people can ship overseas.

Thanks again, these links from the forum make me get a grip!

Hi Katrina!

I used to be the biggest processing food queen before going gluten free, so it was a big adjustment for me to change my ways. ;) It really is a huge lifestyle change, but it's so worth it. :)

Here are a few vitamins that I'm taking. I'm doing really good on them.

GNC Ultra Women's Active Multi vitamin - I know you could buy these on line. I called the company a few months ago and asked about gluten, cross contamination and testing. They reassured me that they couldn't place a gluten free label on it if the product was made on shared lines and they do test for gluten. It made me feel better. :)

Vitafusion Gummy Vitamins - Vitamin C 250 (Target has this brand or you could buy them on-line) - This company has no gluten at all in their facility and that's a huge plus!

Vitafusion Gummy Vitamins - Calcium 500 with vitamin D 1,000

I also heard good things about Kirkman Labs. I haven't taken any yet, but I just ordered folic acid from them. They also don't have any gluten in their facility and they do test for gluten! Yay! :)

Good Luck and I hope you feel better soon! :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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