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

Does This Sound Like Anyone


GlutenGuy36

Recommended Posts

GlutenGuy36 Contributor

Ok I have been on the Gluten Free diet since I was diagnosed July 14th of 2008. I am still sick not feeling right at all. Most of the abdominal issues have resloved except for painful belching after I eat. My main issue is I am in alot of random pain. I have removed nightshades, casein from my diet and I am now working on Soy.

I went out to rake the leaves today and when I was done my heart was racing I felt like I was going to collapse. I have been taking vitamins b-12,zinc, magnesium, calcium and d3.

I have looked into Candida Albicans and am trying to cut back on the sugar intake and I am drinking coconut Kefir. Its fermented coconut milk with 10 strains of probiotic. I honestly feel like I'm getting worse. I have no clue what is going on. My doctor says I shouldn't be feeling like this.

My glands hurt from time to time the ones in my neck and under my arms. I told my doctor all of this and he ran a cbc panel, thyroid was 4.59 ( considered normal), liver and kidney panel which was also fine.

I don't know what else to do. I have been super careful about gluten and cross contamination. I'm tired of being in pain everyday.


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



Celiac.com Sponsor (A8-M):



Ahorsesoul Enthusiast

Try keeping a detailed food and feelings journal for a few weeks. I think you'll figure out what is bothering you. List all things you use that touch your body and that you eat. You may be one of those people (like me) that has to worry about even the little things in life (like shampoo, soaps and gum).

  • 2 weeks later...
sadeew Newbie

I suspect you have 3 or 4 unrelated things causing the various problems you are having. You will find answers, just keep at it!

And you may want to go to a Naturopath if things don't change soon.

When I read your post a couple of things stood out:

The painful belching after you eat. You may not be producing enough hydrochloric acid (quite common, especially after the age of 30) and you may also need some digestive enzymes. If you aren't producing enough hydrochloric acid you will still have malabsorption issues. Get some HCL tablets. The way you take these is:


Take 1 with a meal (avoid taking with citrus fruit and something else I can't remeber but hyou can find if you google HCL). Do this for 2 days with each meal. If you do not get any burning...


Take 2 pills per meal.


Continue adding an extra pill every 2 or 3 days until you get a heart-burn feeling or unitl you reach 4 tablets. DO NOT take more than 4 tablets per meal.

This should alleviate the belching and improve absorption.

The other thing that stood out was the raking leaves part. Do you know what your ferretin levels are? You did not mention that you are taking iron but iron is one of the first nutrients to not be absorbed with Celiac. Your ferretin (blood iron stores) needs to be between 45 and 100. If you are lower than 45 it is very likely that you will get easily winded. My ferretin used to be at 10 but I was told I wasn't anemic. I would feel like I was going to fall over just after climbing the stairs! I suspect you are ferretin deficient. It's a simple blood test but you have to request to know your ferretin levels - GET THE NUMBER, don't just let your doc say that you are within normal ranges. Normal ranges are 10-150. I have never heard of anyone feeling good with ferretin under 40. Most men don't get ferretin checked because it is rare for a man to be anemic. But not with Celiacs!

Lastly I would say to get a food allergen blood test. Guessing which foods to eliminate on your own can take a really long time and it sounds like you are too miserable right now to be guessing. I have a friend who found out she is highly allergic to asparagus! I NEVER would have thought to eliminate asparagus. She was eating it a couple times a week and feeling horrible, not knowing it was a problem.

The fact that your glands hurt makes me think you may be dealing with an allergy still.

Recap:

take hydrochloric acid for the belching

get ferretin levels checked

get a food allergy test

My low iron (ferretin) made me in pain all the time. My muscles ached, I was tense, I was fatigued, depressed, anxious, and I got winded and wiped-out from the littlest physical exertion.

Hope something in here helps you.

All the best. Sending good luck vibes and prayers your way.

Korwyn Explorer
Ok I have been on the Gluten Free diet since I was diagnosed July 14th of 2008. I am still sick not feeling right at all. Most of the abdominal issues have resloved except for painful belching after I eat. My main issue is I am in alot of random pain. I have removed nightshades, casein from my diet and I am now working on Soy.

I went out to rake the leaves today and when I was done my heart was racing I felt like I was going to collapse. I have been taking vitamins b-12,zinc, magnesium, calcium and d3.

I have looked into Candida Albicans and am trying to cut back on the sugar intake and I am drinking coconut Kefir. Its fermented coconut milk with 10 strains of probiotic. I honestly feel like I'm getting worse. I have no clue what is going on. My doctor says I shouldn't be feeling like this.

My glands hurt from time to time the ones in my neck and under my arms. I told my doctor all of this and he ran a cbc panel, thyroid was 4.59 ( considered normal), liver and kidney panel which was also fine.

I don't know what else to do. I have been super careful about gluten and cross contamination. I'm tired of being in pain everyday.

Soy caused(causes) a number of neurological (CNS) and muscular issues for me. Also, I have a very hard time tolerating any refined sugars (sucrose, refined fructose or corn syrup in any form). Raw honey, pure maple syrup, raw agave seem to be ok, but anything else sugar wise causes problems.

Any large quantity of carbs also will cause problems.

Look for soy, lactose, milk products, starches in all your supplements and medications. One example I just found is the Kirkland brand (Costco) of generic Claritin contains lactose, and a starch binder that is normally made from wheat or corn. Yippe.

I strongly suggest you see a naturopath and get ALL of your nutritent levels checks. Iron, B's, C, D, A, E, K, magnesium, copper, molybdenum, etc. It sounds like you are suffering from a number of nutrients malabsorption issues.

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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.