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

Body Pains


murlene

Recommended Posts

murlene Rookie

Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.


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



Celiac.com Sponsor (A8-M):



judy05 Apprentice
Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

This is one of my major symptoms along with insomnia. I am giving up corn and eggs because I tested positive for them on a York test. I'm still having problems sleeping. I take Zoloft and Klonopin. He wanted me to try Trazadone but I sleep all day instead of at night. I was recently glutened from the drywall paste which was being used in our new house. I feel better than I did but still can't get rid of it. I would feel so much better if I could just sleep all night and didn't have the pain. It's sounds like you might have fibromyalgia. Sometimes a small doese of Amitryptiline can help, it helped me when I first went gluten-free. I will ask my MD about it next month, maybe it would help to take it again. Hope you find some answers, you are not alone!

RiceGuy Collaborator

Same here, but at least it's clearing up a bit I think. It was getting better awhile back, then took a nose dive again a few weeks ago :(

From what I've been reading, various organs are all suffering in some ways, partly due to lack of nutrients, and partly due to toxins leaking in from the gut. The more foods I cut out, the better I feel, but the trade-off is energy, hunger, etc.

I've also just read about plastic containers leaching small amounts of substances which might ordinarily not be noticed, but when the gut leaks, more of them get into the blood stream. So I'm probably going to replace any plastic containers with good 'ol glass.

There is a Homeopathic remidy called Open Original Shared Link which I've recently run into, and it sounds like something which may benefit many Celiacs. I'm still hesitant to try it, but it's natural as opposed to the drugs most doctors prescribe.

trents Grand Master

Glutened from the drywall paste being used in your house? Are you serious? Do you mean the fumes or what? I thought gluten had to be ingested to cause Celiacs a problem.

judy05 Apprentice
Glutened from the drywall paste being used in your house? Are you serious? Do you mean the fumes or what? I thought gluten had to be ingested to cause Celiacs a problem.

I was trying to be helpful to the contractors. Every night I swept up the dust which had fallen to the floor. It got in my hair and all over my clothes. I had to shampoo every night and you know what they say, just a little dab will do you. I got so glutened that i was unable to walk to the doctors office. Of course he had no clue, so i got on the board and ravenwoodglass figured it out. I'll always be grateful to her, I thought I was crippled for life! Just remember drywall paste contains GLUTEN!

bluejeangirl Contributor
Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

I remember the worse I've felt was about 10 yrs ago when on vacation in florida. I had joint pain come on out of nowhere. Then the restlessness at night. I concluded it was the sudden change in climates. I went from cold dry air from WI. to humid hot sticky wet weather. I even noticed the wall paper was peeling in the cheap motel room we were at and I looked under it and there was mold growing. I told my dh we had to leave the motel because of the mold problem. He wasn't happy but could see I was miserable. We ended up in a very expensive motel :o but I got better and could finally sleep.

So mold will usually be the culprit in my joint pain and also weepy and tiredness. Which has more to do with candida and leaky gut.

gail

Ursa Major Collaborator

I used to have SEVERE joint and muscle pain, which initially stopped when going gluten-free, but came back three months into the gluten-free diet. I then figured out I am intolerant to ALL lectins (not just gluten). They were causing the joint and back pain (amongst many other things). And I am intolerant to salicylates as well, which caused the muscle pain primarily. I am only speaking of pain here, omitting the million other symptoms.

Foods high in lectins are: All grains (including rice and corn), eggs, dairy, legumes (including soy) and nightshades.

The foods highest in salicylates are: Honey, almost all herbs and spices, nightshades, berries, juices, most nuts. And Aspirin (which is 100% salicylic acid) could put me into anaphylactic shock.

You may want to check out the sites I am linking to in my signature. In my opinion, EVERYBODY with fibromyalgia (or fibro-like symptoms) has intolerances causing the pain, brain fog etc.

I was for years on codeine 24 hours a day for the debilitating pain, which often I had to supplement with extra strength Tylenol, just to manage at all. Even with high doses of painkillers I was still in pain, but had to limit them to be able to think and to drive.

Since going gluten, lectin and salicylate free (and by the way, nightshades are high in both lectins AND salicylates) I don't usually need ANY painkillers any more. Just for the occasional migraine or when eating the wrong things.

Oh, and I react very strongly to mold as well.


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



Celiac.com Sponsor (A8-M):



chgomom Enthusiast
Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

----------------

Oh yes, yes and more yes. I am newly diagnosed and yes it is all related. If you a re new to gloing gluten free, part of this I think is because your body is detoxing, or if its been a while, you have all this built up in your body and you may have mineral issues causing bone pain, which if after a couple of weeks does not go away you should have a doc check out.

RiceGuy Collaborator

Ursula, about salicylates, since broccoli and spinach apparently have high amounts, as well as tons of other veggies and fruit, does that mean you can't eat those either? Or have you identified certain types of salicylates as safe for you?

Sarah8793 Enthusiast
Hi, I have been miserable with bottom of my feet pain, lower back pain, hip pain and just feeling achey all over. What can be done about this and is it normal for a person with celiac disease to be so achey all over. I don't get the sleep I need because I am in such pain all the time. Any answers or help would be apreciated.

You just described what I am going through now. Except I would add a weak and heavy feeling in my legs and arms. I have been hoping it is due to only having gone gluten free 7 weeks ago. All of it just came out of nowhere a week ago. My regular doctor referrred me to a neurologist who says he can't find anything wrong or concerning but is checking my B-12 levels and tyroid. I am thinking it has to be from previous gluten consumption. Today, I am feeling better so hopefully it will pass soon. Good luck.

Sarah

Ursa Major Collaborator
Ursula, about salicylates, since broccoli and spinach apparently have high amounts, as well as tons of other veggies and fruit, does that mean you can't eat those either? Or have you identified certain types of salicylates as safe for you?

I can eat things like broccoli and spinach only occasionally, if I make sure that for the rest of the day I eat only things with no salicylates at all.

The only fruits I can still eat are peeled pears, peeled golden delicious apples and a banana once a week (don't know why I can't tolerate those). I initially ate pears every day, but developed an allergy to them. So, I avoided ALL fruit for a couple of weeks, and now I can eat a pear once every couple of days or so.

All things that are high in salicylates are unsafe for me, and I can't have them. If I do, I'll get symptoms of bladder infection and pain. Fortunately, that usually only lasts a couple of days.

The only vegetables that contain negligible amounts of salicylates and are therefore safe in any amount are, white/green cabbage, celery, bamboo shoots and rutabaga. Then there are the one I can have in limited amounts, and not too many each day, since it adds up. I go over a certain limit, and I will know!

murlene Rookie

:D

----------------

Oh yes, yes and more yes. I am newly diagnosed and yes it is all related. If you a re new to gloing gluten free, part of this I think is because your body is detoxing, or if its been a while, you have all this built up in your body and you may have mineral issues causing bone pain, which if after a couple of weeks does not go away you should have a doc check out.

Thank you very much, you no I just feel like I should be feeling better instead I feel terrible. The Dr. gave me something for the pain but it only helps alittle. The problem I think is I don't have a Dr. that really understands all the different things that are attributed to gluten. I just feel like no one seems to believe me or take me serious, even people I work with kind of blow me off. I am getting pretty discouraged with this whole mess. I have really been trying hard to do what is right for myself but it's hard when you feel like crude anyway. What are mineral issues?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.