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

I Don't Know What To Do Long Trying To Find Anwsers


BUGTWIG

Recommended Posts

BUGTWIG Rookie

I am a migraine sufferer. and my whole life have had stomach bowel problems been tested and diaganosed with many things IBS GERD Spastic Colon Never quite getting a fix. Then on a Diet to loose weight I didn't eat bread or processed foods. Then Once I started again I had all the same syptoms cramps bloating running to the bathroom more migraines etc. So I gave up ALL wheat listed in the ingredients. So The Doctor brought up Celiac Spure But said to be tested I would have to start eatting wheat. I said NO way.

Any way in the mean time I have had some weird syptoms and don't know if the can be related. I passed out at work went into shock and was taken by ambulance to the hospital for a 5 day stay. They aren't sure what caused the shock. My potassium levels were really low. I turned elmo red. Since then I have had high levels of serationin in my urine. and my tryptase levels were elevated. I have since seen an endrochronologist and waiting for tests.

I am curious if any of this sound familar to anyone ? does it sound like it is related to celiac?

Any Advice?

I am so frustrated sitting and waiting for tests and answers. I am scared to drive or be alone with my youngest son. I am eating Gluten free and it is frustrating to figure it all out. I was also put on a MSG free diet. I tell you if it doesn't have gluten it has MSG.

Waiting

Jyn


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



Celiac.com Sponsor (A8-M):



zansu Rookie

Some of the thyroid and etc folk will be along soon.

But even I can tell you that nutritional deficiencies and mal-absorption are key characteristics of celiac. after all, your intestinal lining that takes care of all that might be quite damaged. Stay off gluten (not just wheat, but barley (and malt) and rye). Take whatever supplements they decide you need, just make sure they're gluten-free, and treat the secondary issues until your body has a chance to heal.

you're not alone and there are lots of folks here who can give you first hand data.

sansglutengrl Explorer
I am a migraine sufferer. and my whole life have had stomach bowel problems been tested and diaganosed with many things IBS GERD Spastic Colon Never quite getting a fix. Then on a Diet to loose weight I didn't eat bread or processed foods. Then Once I started again I had all the same syptoms cramps bloating running to the bathroom more migraines etc. So I gave up ALL wheat listed in the ingredients. So The Doctor brought up Celiac Spure But said to be tested I would have to start eatting wheat. I said NO way.

Any way in the mean time I have had some weird syptoms and don't know if the can be related. I passed out at work went into shock and was taken by ambulance to the hospital for a 5 day stay. They aren't sure what caused the shock. My potassium levels were really low. I turned elmo red. Since then I have had high levels of serationin in my urine. and my tryptase levels were elevated. I have since seen an endrochronologist and waiting for tests.

I am curious if any of this sound familar to anyone ? does it sound like it is related to celiac?

Any Advice?

I am so frustrated sitting and waiting for tests and answers. I am scared to drive or be alone with my youngest son. I am eating Gluten free and it is frustrating to figure it all out. I was also put on a MSG free diet. I tell you if it doesn't have gluten it has MSG.

Waiting

Jyn

Welcome Jyn,

I don't have many answers for you, but I can tell you that you will find the support and answers you need here, don't worry. I know very very little about shock and what would cause it - but I do know that lots of people have trouble when they go gluten free because it's such a drastic change. It can be hard to cut out so much and make sure you're still getting enough of the good stuff. Instead of vitamins, which can be hard on your stomach and you can add later when you are more comfortable, make sure you are eating a well rounded diet - lots and lots of protein, and a little fat if you can take it. When my gut is in pain, I eat only rice and chicken - it's a little bit of carbs, a little protein, and I think it's a soothing meal.

Also, about being afraid of driving or being along with your youngest son - don't be too hard on yourself - not only can celiac contribute/cause anxiety and depression, but you have no reason to trust your body right now, of course it's scary! But it will get better, I promise. I do also want to tell you that I used to get terrible, three-day long migranes and I have not had a single one since I went gluten free about a year ago. So hang in there, it may be looking up. :)

Hope you feel better soon.....

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. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

    2. - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    3. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748

    rolland mcclay
    Newest Member
    rolland mcclay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.