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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748

    Jem68
    Newest Member
    Jem68
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.