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. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Have I got coeliac disease

    3. - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

    4. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    5. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
×
×
  • 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.