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Symptoms Went And Then Returned


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#1 katrina500

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Posted 12 March 2011 - 05:32 AM

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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#2 Tigercat17

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Posted 12 March 2011 - 09:48 AM

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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Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#3 katrina500

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Posted 12 March 2011 - 11:59 AM

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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#4 ravenwoodglass

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Posted 12 March 2011 - 12:08 PM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 katrina500

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Posted 12 March 2011 - 12:17 PM

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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#6 Tigercat17

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Posted 12 March 2011 - 04:27 PM

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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Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09


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