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Cycles Of Symptoms?

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Hey all,

Wondering if this sounds familiar.

My symptoms include persistent stomach pain (burning) for which I take aciphex, and that usually keeps it under control.

However, the symptoms I experience the most our episodic. I have "spells" or bouts where I will have widespread muscle and joint pain (particularily my knees). I will start to feel this pain in my hands and knees on day 1. On day 2 I get the mental fogginess and have problems completing sentences or remembering common things, like my own cell number. By day 3 my whole body aches and is in pain and all I can do is lay in bed. By the end of day 4, I am feeling better and completely back to normal by day 5. I get these every 2-4 weeks, they always seems to last this long. Sometimes I can work, most of the time I cannot.

A year ago I thought these spells were related to food. I got tested (RAST) and discovered intolerances to wheat (level 1) and dairy (level 5). I cut both out but I still get the spells.

Since my wheat intolerance is not very high, I am not super strict about avoiding gluten. I stay away from all the obvious sources, but do not always weed out the hidden sources.

So my question is, does this happen to any of you? Do any of you go through cycles that put you in bed for a day, only to be fine a couple days later, even with other food intolerances?

And is there a "build up" of gluten that needs to occur before a reaction takes place, for example eating a hidden source for 10 days and then all of sudden you are hit with symptoms?

Finally, I recently was tested for Celiac via the bloodwork panel but it was negative. Since I have been gluten free for over a year, would that impact the results. Assuming so. I also have a endo scheduled for next Monday to look for Whipples, but the dr is going to check for Celiac as well. Will that show negative since I have been gluten-free for year? Again assuming so. Should I start eating gluten now, will it make a difference in a week?

Thanks in advance!

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From what I have read here and online yes you should be eating gluten for them to test.

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My symptoms for years were sporatic and for awhile we thought it was some form of PMDD since most happened for two weeks before my period. Then my period would come and I would have a couple days of D right before it started. Then I would feel fine with only occasional D for another two weeks then the cycle would return.

Then things got much much worse and the issues just stayed and increased.

The description you give fits me more now when I get glutened. I get hit first with a bad depression and stomach pain. Then brain fog sets in and within 3 days I will have a day of violent strength sapping D. After that the joint and muscle pain comes usually along with tooth and jaw and my balance will be worse and I will feel very tired. The whole progression for me takes about 3 weeks.

If you want testing for celiac you need to get back on a full gluten diet for at least 6 weeks to 3 months for any chance of it's coming up positive. If you are getting an endo the same applies. There is still the chance of a false negative on both even after a challenge.

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If you're gluten-intolerant or a celiac, then it's essential to stay away from gluten. If you're occasionally still enjoying it, then it shouldn't be a wonder that you're having episodes. Depending on your sensitivty to gluten, even a crumb might affect you.

If you're a woman and in her late 40s/early 50s, it could also be hormonal, or you could be hypoglycemic. Although I've finally figured out one of my problems (I've been on short-term disability for 1 1/2 months now), I'm still trying to figure out if my problems stem from being hypoglycemic, which requires a lot of protein (which has been a root cause of my constipation) or hormonal. At least I got one thing figured out...only one more to go.

Most likely, this is not your problem. However, if you're abstaining from gluten, and you are still having these episodes, don't rule them out. But from what it sounds like to me, you're ingesting gluten, and you're having episodes. Either ingest gluten for testing purposes or abstain from it to ensure you feel good. If you abstain and are still having problem, then consider other problems.

Good luck. Some have an easy road to recovery, others do not. I hope yours won't be as rough.

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My symptoms include persistent stomach pain (burning) for which I take aciphex, and that usually keeps it under control.

However, the symptoms I experience the most our episodic. I have "spells" or bouts where I will have widespread muscle and joint pain (particularily my knees). I will start to feel this pain in my hands and knees on day 1. On day 2 I get the mental fogginess and have problems completing sentences or remembering common things, like my own cell number. By day 3 my whole body aches and is in pain and all I can do is lay in bed. By the end of day 4, I am feeling better and completely back to normal by day 5. I get these every 2-4 weeks, they always seems to last this long. Sometimes I can work, most of the time I cannot.

A year ago I thought these spells were related to food. I got tested (RAST) and discovered intolerances to wheat (level 1) and dairy (level 5). I cut both out but I still get the spells.

These all sound familier to me as gluten related symptoms in my case.

Since my wheat intolerance is not very high, I am not super strict about avoiding gluten. I stay away from all the obvious sources, but do not always weed out the hidden sources.

Why would you say your intolerance isn't very high? If you are intolerant you must avoid gluten just as if you had celiac disease. Since you are only gluten light, it could explain the recurring problems.

So my question is, does this happen to any of you? Do any of you go through cycles that put you in bed for a day, only to be fine a couple days later, even with other food intolerances?

Only when I slip up and eat gluten like you are doing.

And is there a "build up" of gluten that needs to occur before a reaction takes place, for example eating a hidden source for 10 days and then all of sudden you are hit with symptoms?

My only symptom that seems to build up over days is DH.

Finally, I recently was tested for Celiac via the bloodwork panel but it was negative. Since I have been gluten free for over a year, would that impact the results. Assuming so. I also have a endo scheduled for next Monday to look for Whipples, but the dr is going to check for Celiac as well. Will that show negative since I have been gluten-free for year? Again assuming so. Should I start eating gluten now, will it make a difference in a week?

What were the results of your bloodwork? If you publish the results here, there are those that can interpret them for you. False negatives are common. It's hard to tell what your endo will show. Since you are only eating gluten light it could show positive or that could be enough reduction that you will test negative. Either way, you could still be gluten intolerant and that will not show up on any test but still give you serious symptoms.

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