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Not Sure...
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Hey guys...

This is going to be a long post....

I've been experiencing extreme fatigue, aches and pains (muscular & joint(, headaches, migraines, cognitive problems amongst many things for the last 6 years. I initially had a diagnosis of CFS/ME which was then changed to Fibromyalgia and (possibly) lupus. Basically, my blood work suggests a possible lupus diagnosis but currently I don't fully meet the criteria for a full diagnosis (apparently it can take many many years). Anyway, back in 08, I was tested for Celiacs after I complained of a grumpy tummy when I had a lot of wheat based products. I was negative then which I thought nothing of and assumed that that wasn't a problem. Then in early June, I had a large crash and mum suggested I go gluten free. I asked by GP about it and she said it was worth trying because some people can be negative in the blood test but still be sensitive. So I started on a gluten-free diet for 6.5 weeks. Initially, I thought it had some effect as I didn't have a huge crash and wasnt in a lot of pain after my exams. But the baseline level of fatigue did not change so I assumed it didn't work. Basically, Ive been back on a normal diet for a week now and whilst my energy levels havent suffered, I've become quite sore again doing minimal things (especially from yesterday) - the sores I've been in weeks! So I guess after all this info that I've bombarded you with, I'm wondering whether there can be a "delay" in a reaction to gluten. I hear of people getting sick almost immediately after they've consumed gluten so I don't know whether to consider this part of my "other" conditions or some reaction associated with gluten.

Thanks for your time & reading this.

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Hi and welcome to the board! Yes what your doctor told you about some people testing negative but still being sensitive is true. Many people get false negatives for the tests, but positive changes when they do the diet. It sounds like you had some symptoms go away when you ate gluten free. That means you need to stick to the gluten free diet. 6.5 weeks is not very long to give you body to heal if you have been sick for a long time. My symptoms are mostly neurological like you describe (pain, fatigue, etc.) and my neuro symptoms don't start until a day or two after I eat gluten. So there can definitely be a delay. Everybody's body is different in how long it takes them to respond. Some people can also consume trace amounts of gluten over several weeks and feel okay, but the trace amounts add up until BAM they feel like they were hit by the gluten truck. So you should be careful of very small amounts and cross contamination even if it seems like you are not having symptoms.

As far as your fatigue that didn't go away there could be other problems that go hand in hand with gluten intolerance causing the fatigue. Things like vitamin deficiencies or other immune diseases. It's very common for people with celiac to have other things like lupus or thyroid diseases. The good news is that going gluten free will not prevent you from being tested for these other things. It will make any future tests for celiac negative however. If you were avoiding large amounts of wheat prior to your first blood test (because you said you already noticed it made you crash) then that could have made the results low enough to be false negative. I have read you need to consume the equivalent of 4 slices of bread a day for 2 months prior to testing in order to get a chance at a positive test. So if you were not eating large quantities of wheat to begin with that could explain the negative test.

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Yes, there is a delay from gluten-caused autoimmunity. Some people have fast reactions. My own symptoms can be anywhere from 4-48 hours after eating gluten, and I don't get the canker sores until a few days later. I was just reading a paper that the peak in T-cells in celiacs fed gluten is actually not until six days after the gluten.

I'm glad you found something that might help the pain. I hear fibro is pretty awful.

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Hmm... thanks guys. I may have to consider going off gluten another time and this time make more note of other symptoms. Whilst I was off gluten, I still had a background low level ache but it didn't really escalate to the "sharper" muscle pain that I'm getting everyday now. Will have a chat to my GP about it

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my knees hurt a lot on gluten and it went away off gluten and came back with the gluten challenge.

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nora_n,

If you don't mind me asking, how long after you began the gluten challenge did your pain return?

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just a matter of days I think.

I found I had forgotte all about it but I had notes.

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