Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Soreness

sore joints

Recommended Posts

sore joints Apprentice
sore joints
Posted

Does anyone else have any experience with bone aches and joint pain. I had what I call a flare up in Nov/Dec and for the last two weeks I've been experiencing another. In between I've had the occasional pains - usually in my hands. They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable and I'm just a little down. I feel like I'm losing my mind. One minute there's no pain, then the next minute I can hardly hold my daughter. What the heck is going on. My blood tests were mildly abnormal for Celiac (been referred to Gastro Doc). I just had food testing done through my naturalpath and I've booked the test through Enterolab. I'm just going to go off gluten in two weeks to see how I feel. It's going to take me 2 weeks to research this and figure out how I'm going to survive. I love all things gluten. Would love to hear from someone with similar aches and pains b/c this doesn't seem to be the norm. Thanks!

Alison<_<

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

Hi Alison,

I had (still have occasionally) joint pain really badly ever since I was a child. I've been gluten free for a few years now and it is much better.

I would like to mention to you though that you should NOT go on the gluten free diet until after you see the gastro specialist. They will most likely want to do an Endoscopic exam with biopsies and if you are gluten free for even a few days before that test it can mess up the results and give a false negative result. Even on a gluten-filled diet the test results can be questionable, so you really don't want to do anything to mess with them. Despite the problems with the biopsy it still remains the "gold standard" to diagnose Celiac disease. :huh: A positive biopsy means that you have Celiac, but a negative does not mean that you don't have it, it just means one of a few options: (a) they can't see the damage yet, (B) they can't find the damaged patches, or © they can't diagnose it due to unskilled doctors/lab techs who don't know how to take a biopsy sample or what to look for under the microscope... There are just too many ways they can go wrong to make it a reliable test.

Lots of people have questionable blood test results. On of the reasons is that the antibodies leak into the blood stream at a different rate for each person. It usually takes a lot of intestinal damage for the antibodies to be at detectable levels in the blood, but you can still be completely ill with many symptoms. Lots of false negatives with the blood tests too.

The stool tests are more sensitive to picking up the antibodies. But as this is a fairly new method of diagnosis it is not widely accepted in mainstream medicine yet. But I believe it will be someday, and those of us who have been diagnosed by them know they are accurate. If they weren't then there would be no explaining why we all feel better on the gluten free diet.

The gene tests are fairly accurate. There is still research going on to determine if they have isolated ALL of the gene responsible for causing an intolerance to gluten, but it is widely accepted that DQ2 & DQ8 (which is really DQ3, subtype 8) are the two main genes responsible for this disease. Enterolab also tests for DQ1 & DQ3 genes that they say are gluten intolerance genes. Since my boys have these "other" genes and not only obvious reactions to gluten, but a very positive response to the gluten free diet, I believe this research is correct. They have never been so healthy in all their lives! I highly recommend the gene test.

ravenwoodglass Mentor
ravenwoodglass
Posted
Does anyone else have any experience with bone aches and joint pain. I had what I call a flare up in Nov/Dec and for the last two weeks I've been experiencing another. In between I've had the occasional pains - usually in my hands. They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable and I'm just a little down. I feel like I'm losing my mind. One minute there's no pain, then the next minute I can hardly hold my daughter. What the heck is going on. My blood tests were mildly abnormal for Celiac (been referred to Gastro Doc). I just had food testing done through my naturalpath and I've booked the test through Enterolab. I'm just going to go off gluten in two weeks to see how I feel. It's going to take me 2 weeks to research this and figure out how I'm going to survive. I love all things gluten. Would love to hear from someone with similar aches and pains b/c this doesn't seem to be the norm. Thanks!

Alison<_<

It may not be the norm but you are not alone. After years of misdiagnosis I was on canadian canes and could barely use my hands. The arthritis in my back, knees and feet made walking close to impossible and getting up and down stairs took a very long and painful time. 6 months before I was finally diagnosed we spent thousands remodeling my home because it was felt I would soon be in a wheelchair. 6 months after diagnosis I caught myself running, yes running up the stairs without even thinking about it. I sat at the top and cryed with joy, literally, my DD thought I'd gone nuts. I didn't beleve my doctor when he said so many of my diagnoses were celiac related. I was just happy not to spend hours in pain in the bathroom. An accidental glutening will refire the arthritis but those flares are now few and far between. The joint damage is still there but I no longer have any pain at all. My recovery from near death has been more of an incentive to my family for testing than anything else. They have watched my hair grow back, my moods stabelize for the first time in my life, and my DH loves not paying the close to 20 grand we used to pay in co-pays alone for tests and meds and specialists that were for the most part useless. You have had a positive blood test. You should be gluten free. It seems daunting at first but if you keep it simple with whole mostly unprocessed foods at first that makes it easier. If you live in an area that has a Wegmans Market they label all their gluten free food with a circle G. I feel very fortunate to have one close it makes shopping easier. Welcome to the boards.

LKelly8 Rookie
LKelly8
Posted
They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable

Alison<_<

Maybe vitamin/calcium depletion from the pregnancies? A damaged small intestine from celiac would certainly make it much worse.

Do you have any history of rheumatoid arthritis in your family? Do your joints actually look red and swollen, or just feel sore/stiff?

My mother, who's had celiac since infancy, has had sore/stiff joints from celiac. Also a strange "curling" sensation of the fingers and toes. There's a medical name for it, I can't remember it right now.

I have joint pain but it's from rheumatoid arthritis! RA (and other autoimmune diseases, like celiac) are known for flaring up after big, stressful events - surgery, major illness, pregnancy, etc.

jnifred Explorer
jnifred
Posted

hmmmmm are you sure you're not my other half?????? I was diagnosed with clinical rhuematiod arthritis after the birth of son #2. Blood tests always came back normal, but my thumb was swollen to twice the size and my other joints refused to work properly. Couldn't open jars, squeeze bottles, etc. Wasn't good. Played with OTC meds for about 3 years, then when son #3 was born flared up REALLY bad post partum and still I tried various things. Finally went to Rhuemy doc and got diagnosed with RA and/or ankylosing spondylitis. Could get enough rest. I would sleep 12 hours and wake up exhausted, was achy, couldn't get comfortable...was a mess. Anyway, doc started me on meds, helped a lot. Got preg w/son #4, things post partum didn't come back as bad, but other issues started......my mom watched a show on Discovery Channel about Celiacs, and called me the next day to tell me she figured out what was wrong with us. Unfortunatly I had, over the course of the last several years, unknowingly modified my diet to the point that I could go for days without eating anything with gluten in it. So my internal med doc wasn't surprised when my blood test for celiac came back "normal", high side of normal, but still in the normal range. So I played around with gluten for a while and noticed a DIRECT link to my flare-ups and the other typical celiac symptoms when I ate gluten, whether it was accidental or on purpose b/c I was mad.

ANYWAY, I am now completely gluten free and I feel better than I have in YEARS!!! My jaw still bother me, but that I think is more from other stressors in my life and the fact that I got braces about 2 months ago (oldest son got them, and I thought what the heck??) anyway........you are not alone.....

rumbles Newbie
rumbles
Posted

Parathesias and bone pain are symptoms of celiac disease. They are also symptoms of other diseases. Once your testing has been completed, whether the results are positive or negative, it would not harm you to go on the gluten free diet, at least temporarily, to see if your symptoms resolve when you take gluten out of your diet. Be aware that gluten resides in a great many foods and products, including sauces, flavorings, seasonings, some salad dressings, some butter spreads, - even in the glue on envelopes and stamps, in some cosmetics (including lipsticks), in many candies (including licorish and hard candies); the easiest diet to start out with would be a "raw" diet, - one based on plain meats, fresh vegetables, fresh fruits, with any add-ons being checked first with the manufacturer to see if the product is gluten free, and if it is produced in a gluten free facility (so there is no potential cross contamination). When on the diet, make sure that you are getting plenty of fresh vegetables and fruits, to make sure that your getting the vitamins and minerals that your body needs.

Be aware that wheat-free on a label does not mean gluten free. Many manufacturers will list on their web sites whether or not a product is gluten free (some list potential for cross contamination, but not all); if they don't, most have a way to contact them (either phone number or email). Do not hesitate to contact the manufacturer if you are not sure.

Many over the counter medications, vitamins and supplements contain gluten, - check the label, and check with the manufacturer if needed. Many oral prescription medications contain gluten, - check with your pharmacist or the manufacturer. Some toothpaste formulas have gluten in them. Be aware of everything that you put into or around your mouth when you are attempting to go gluten free. It's a pain in the beginning, but if you find that you need to stay on the gluten free diet, it will become easier with time.

There are many posts in these message boards about gluten free food manufacturers and where to buy gluten free products, - this is a great place to start. If you need to remain on the diet, accept that there will be occasional mistakes, but they become fewer and fewer as you become more familiar with allowable foods. Good luck!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748
    Kris46
    Newest Member
    Kris46
    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

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...