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

Cd, Fibromyalghia, Food Intolerances/allergies


Captain Obvious

Recommended Posts

Captain Obvious Newbie

Ok, so I'm a diagnosed celiac with years of celiac disease diet - first started in 1999. I'm certain that my diet no longer contains gluten and has not for at least 2 years.

Since going gluten free though I've developed several other food allergies/intolerances - milk, eggs, citrus, various preservatives, etc.

Here's the kicker though - one aspect of the reaction spectrum that my body has to all of these foods is severe bone, muscle pain - I mean crippling that takes 2 weeks to clear and it seems to be getting worse - like scary worse. I got diagnosed with fibromyalghia, but it seems to go beyond that - I experience actual muscle damage - it literally feels like muscles are being torn from the bone even when I make the simpliest of movements. And, in fact, it seems that they are as my injuries take weeks/months to heal.

Anybody else out there like this? Are we looking at some other sort of connective tissue disorder here? Are the other food allergies/intolerances going to fade? Or get worse - they seem to be getting worse... Please don't say see a doctor, you guys are the pros, I haven't met a doctor yet that knows 1/3 as much about this stuff as I do and I'm out of money. This sucks. It was bad enough giving up gluten products, now milk, eggs, and all sorts of other stuff. Oh yeah, I seem to be allergic to just about every sort of pain killer there is so all I can do is moan in bed and pray for sleep. Starting to think I'm some sort of monk or something -


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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast

Hi Captain Obvious,

I noticed no one had responded to your post and as I was reading it the first thing that I wanted to ask was what do the doctors say? Of course then you said not to say go to the doctor, so I'm not sure what to say. It does sound like there is something else going on besides celiac disease. Sure we can heal from the intestinal damage, but that does not make us immune to other illnesses. My son is 7 and has Epstein-Barr Virus (for most of his life-he is in remission) and he also is being tested for Celiac (since I have it and he has always been sickly), as well as being tested for other genetic disorders causing his recurrent fever disease (one of those diseases there is only 180 diagnosed cases world wide!). I think to myself, what are the chances of him having two genetic disorders. But then it would explain his constant recurrent illnesses.

The allergy/intolerance thing is common. It may be that you did not develop the other intolerances after you stopped eatuing gluten, it may just be that they were finally recognizable. See the gluten damage masks other intolerances and once we start to heal your body is able to get the message through that you are eating something else it doesn't like. I am also intolerant to all dairy (casein to be exact) and I am alleric to soy. I suspect I am having a problem with yeast, and tomatoes and potatos cause me joint pain. I am only allergic to morphine, so I guess I am fortunate, but there should be someone out there who can help you figure out what is going on in your body. There are many others here that are intolerant/allergic to many different combinations of foods that you would think anyone should be able to eat, but you never know.

I hope you are able to find out and stop the tissue damage. I'll be praying for you.

God bless,

Mariann

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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.