Jump to content
  • 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):

Symptoms


Zachm

Recommended Posts

Zachm Contributor

Hello (: Ive been on here a few times and made a couple posts, but I was wondering if I could really get opinions on other sufferers. I got "diagnosed" back in late July from a few blood tests and the doctor felt sure that's what it is. Before July I was just irregular mainly. I went from being a one time a day person to 5,6, or 7 times a day and sometimes not going at all certain days and just an "icky" feeling in my stomach like I can constantly go. So I start going gluten free and my stomach feels VERY bad usually constantly. I watch out for dairy, wont put anything in my mouth or hands that doesn't read gluten free and I didn't make myself(on a couple occasions Ive eaten out but Ive been anal about it. But since going gluten free Ive experienced the worst pains about 7-10 times now. Always about 4am I get woken up by horrible stabbing cramps above my belly button and diarrhea that's starts out like "this is going nowhere but just cramps, then oh wait nope"   and it wont go away and I usually take immodium and fall asleep. I went to my GI the first time a couple days ago and he really hasn't said anything but he wants to do an endoscopy, but my insurance did the loveliest thing and dropped me and between 17 credit hours at college and remodeling a home I have no time to really look up insurance and when I do they say it cant start til November and I do want to get this figured out before then, hopefully. Don't be shy to comment, I just want opinions. Oh and if it makes a different, I have a really loud stomach and for some reason have been getting what feel like uti's but they make no sense...?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry that you lost your insurance (been there and done that).  So, you had a positive blood test in July.  You saw the GI, but without insurance you can not do the endoscopy.   You already went gluten-free, if I recall.    Consider staying gluten-free until you can do a gluten challenge when you are not in school and have insurance.  You may have to have it earlier and without the challenge if you do not get relief from your symptoms.  Things like SIBO or colitis need to be ruled out.  Continue to avoid milk for now.  Watch and be sure everything you eat is gluten-free.  Avoid processed foods as much as possible -- like those Cherrios!  

The diet learning curve is steep.  That is one reason for a slow recovery.  I know you are in pain.  I am so sorry.  Keep at it and you will feel better soon.  

 

bartfull Rising Star

Are you putting up sheetrock? Sheetrock mud is full of gluten and when you sand it it gets in the air like flour dust. You breathe it in and it gets in the back of your throat where you swallow it.

Also, if you haven't already (or even if you have), go to the coping section and read the Newbie 101 thread.

cyclinglady Grand Master

Are you putting up sheetrock? Sheetrock mud is full of gluten and when you sand it it gets in the air like flour dust. You breathe it in and it gets in the back of your throat where you swallow it.

Also, if you haven't already (or even if you have), go to the coping section and read the Newbie 101 thread.

Great catch, Bartie!  

Galixie Contributor

I really know nothing on this subject but the first thing I thought about when reading your description was 'could it be a gallbladder problem?'

The insurance thing is a drag, but if you put off signing up for it, it will take even longer for you to be covered. Since specialists often have fairly long waiting lists, it might work out to sign up for insurance now, find out what specialists are covered and immediately book an appointment for the day your coverage begins.

Obviously, if it feels like it is becoming life-threatening you should get to an ER despite the lack of coverage. Most hospitals will let you work out a payment plan. That sounds like such a unpleasant pain. I hope you can get it diagnosed soon.

Zachm Contributor

I really know nothing on this subject but the first thing I thought about when reading your description was 'could it be a gallbladder problem?'

The insurance thing is a drag, but if you put off signing up for it, it will take even longer for you to be covered. Since specialists often have fairly long waiting lists, it might work out to sign up for insurance now, find out what specialists are covered and immediately book an appointment for the day your coverage begins.

Obviously, if it feels like it is becoming life-threatening you should get to an ER despite the lack of coverage. Most hospitals will let you work out a payment plan. That sounds like such a unpleasant pain. I hope you can get it diagnosed soon.

Ive honestly wondered about that. I am twenty one and my sisters went at about 22 and had to get it removed, my moms was bad at about 30, so I wouldn't doubt it and thankfully we just paid out of pocket to visit the specialist because it took over a month to get that appointment and we couldn't give that up. It seems unbearable some nights and Ive honestly thought about going to the hospital, but who knows

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. - glucel replied to glucel's topic in Super Sensitive People
      16

      iron digestibility

    2. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    3. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

    4. - knitty kitty replied to Aileen Cregan's topic in Related Issues & Disorders
      5

      Coeliac And Cardio Vascular Disease

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

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
    • gregoryC
×
×
  • Create New...