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. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    3. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    4. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

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

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748

    4Nic8ion
    Newest Member
    4Nic8ion
    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

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.