Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Atypical Symptoms; 1 Monthly Attack


pylorus

Recommended Posts

pylorus Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tom Contributor

...

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)

Takala Enthusiast

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....

pylorus Newbie

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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

    VerafromNJ
    Newest Member
    VerafromNJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.