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Atypical Symptoms; 1 Monthly Attack
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History: lost my memory at age 26 in 2007. Dx'ed with hypothyroidism 2008 - synthroid hasnt helped the memory. Not so. Neuro. suggested hashimoto's encephalopathy but was reluctant to start treatment until felt more confident. Finally had neuropsych. testing May 2012 - pretty sure it confirmed my pisspoor memory. havent heard from the neuro.

Saw another endocrinologist June 2012 for another opinon re: memory. He said it might have just occurred at the same time as the thyroid and thus became related - he suggested testing for CELIAC, sleep apnea, B12 etc. This is without having heard of my gut troubles.

ive had a good gut all my life until now.

Oct 2011, Jan 2012, Mar, May, June, July - had severe, nonradiating gut pain with vomitting and diarrhea. I assumed it was food poisoning.

Saw GP in July who ran the suggested tests - gluten antibodies, inflammatory markers, abdo. ultrasound all negative.

Started gluten-free diet july 19-Aug 10 and avoided an attack in august.

A pesky, blistery foot rash (GP wasnt sure if it was the telltale dermatitis herpetiformis) started to clear up - no salve Id thrown at it over the past year had helped. Had to cancel my derm. appt.

A month and a week after re-starting gluten, had a september attack... severe... More than once Ive considered going to the ER because the pain is inescapable. Lasts usually from 7am-5pm. Sometimes shorter. Pain so nauseating sometimes I just self-induce the vomiting because the constriction offers momentary relief. I also get systemic fatigue, feel terrible, in a cloud almost.

started back on gluten-free diet after that. Early october ate a club sandwich, got a mini attack Oct 16... desperately wanted to believe it was food poisoning (I did eat something kind of old!).. but also the pain was different this time, I could sit comfortably for a few minutes, I wasnt so mixed up in the head.

The rest of the month Im fine. My theory is that perhaps Im just gluten intolerant, and my threshold is a month - so it builds up over this time period until it explodes.

I see gastro. Dec 10. and have been gobbling gluten for 3 weeks, hoping he'll proceed with the scoping etc.

IS MY THEORY PLAUSIBLE AND DO YOU HAVE ANY OTHERS?

thank you!

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The rest of the month Im fine. My theory is that perhaps Im just gluten intolerant, and my threshold is a month - so it builds up over this time period until it explodes.

...

And the main worst part of it is 10 hrs or less? (7am-5pm)

I think it'd be unlikely for a straight gluten issue to then be ok for another month.

The first thing that came to mind for me, just from the title, was that the regularity is a Lyme symptom.

More than a few members here turned out to have Lyme & not Celiac.

I don't mean to scare you w/ a whole new thing - some of them do better than some celiacs - but thought it had be mentioned. It used to be discussed in this forum pretty regularly.

That said, I don't remember the lymies having the regular "flare-ups" last as short as half a day. I'd guess usually 2 or 3 days or more. Some were monthly, but also some 3 or 5 or whatever weeks.

Looking into some on the threadlink above should be informative. I think you could, once in that thread, use a searchbox w/ a symptom or 2 for just that thread, since it's probably a little long to read all at once.

(Arrgh I'm on a ph & can't quite check w/ certainty, but if the "search in this thread only" isn't there anymore, using the main search of full forum while adding "lyme" should get to the same posts)

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Celiac can be triggered by lyme disease, it is possible to have both, or get rid of one but sometimes not the other. Thyroid problems highly linked to celiac, too. Funny how the conventional wisdom never blames bad thyroids on deer ticks....

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And the main worst part of it is 10 hrs or less? (7am-5pm)

I think it'd be unlikely for a straight gluten issue to then be ok for another month.

Thanks for the reply. The monthly attack business definitely seems to be the wild card in all this, making it difficult to pinpoint which foods are potential triggers (I kept a food journal for months and saw no obvious pattern) - I looked at lyme symptoms, thanks for the idea, but I dont seem to have (m)any of them.. certainly no joint pain, heart issues etc.. I did meet a reindeer in summer 2011 during a trip to Alaska.. do ticks thrive in cold wet climes??

I saw the gastro. this week and he suggested either another food intolerance or it could well be gluten. It seems suspect that I managed to avoid an attack my very first month of eating gluten-free and that my foot rash (which isnt the characteristic lyme bulls eye) has also disappeared. He thought perhaps the attack I had in october 2011 was true food poisoning which has set me up for ongoing sensitivity and I should try taking a probiotic. He offered no other diagnoses - IBS, etc. Im having the gastroscopy next week, but because my bloodwork doesnt seem to show malnutrition, Ill probably come up negative for celiac.

I just about fell off my chair when the other guy suggested celiac as the link to my memory problem...given the context of hypothyroidism...plus this blistery rash..its definitely adding up in my mind, particularly because im DESPERATE for an explanation about my peabrain.

Id have to have been bitten by a tick YEARS ago and it seems the symptoms would have become much worse over time than they currently are, but Im keeping an open mind since nobody knows anything for sure yet!

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

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      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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