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Hip/low Back Pain


silk

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silk Contributor

I was diagnosed a year ago in November. While I did not go through the biopsy testing, I have type 1 diabetes, Raynaud's Phenomenon, Apthous Stomatitis(mouth ulcers) and all of the GI problems that most of you have, anemia and failure to thrive as a child, hip/joint pain, positive dietary response to a gluten-free diet, etc.. I am 49 years old and have had most of these for most of my life, so my M.D., although he would have liked me to remain on gluten long enough to do the biopsy, is operating under the assumption that I have Celiac disease and not just an intolerance.

Since being dx'd last year, I have remained faithful to a gluten-free diet but as most of you know, sometimes the toxic stuff creeps in where least expected and I get zapped and this is were it gets interesting for me. I work for a Chiropractor, who is also a very good friend and very supportive of me regarding the Celiac. He and his wife researched right along side me so that they would know what I was dealing with. (They gave me a beautiful goodie basket for Christmas filled with all kinds of delicious gluten free products that they carefully shopped for.) Because it is available to me, I frequently receive chiropractic adjustments, especially when I am having hip and low back pain. After being glutened a little over a week ago, I began having severe low back/hip difficulties. Today, after yet another adjustment for the same problem, the doctor told me he had been noting over this past year every time I had had this problem as well as whether I had recently been glutened. With every single occurrence there has been an episode of glutening.

Not necessarily significant info for most of you, but it is interesting to see it documented in my own history and not just an anecdote or symptom listed in a book somewhere. The Dr. (my boss) is guessing that along with chemical changes that take place in the body because of the gluten which may cause instability in the muscles and tendons around the joints themselves, that referral pain from the gastric distress and bloating that occur may also cause a shift in the spine, throwing the hip/pelvis off balance.


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Stefani Newbie
I was diagnosed a year ago in November. While I did not go through the biopsy testing, I have type 1 diabetes, Raynaud's Phenomenon, Apthous Stomatitis(mouth ulcers) and all of the GI problems that most of you have, anemia and failure to thrive as a child, hip/joint pain, positive dietary response to a gluten-free diet, etc.. I am 49 years old and have had most of these for most of my life, so my M.D., although he would have liked me to remain on gluten long enough to do the biopsy, is operating under the assumption that I have Celiac disease and not just an intolerance.

Since being dx'd last year, I have remained faithful to a gluten-free diet but as most of you know, sometimes the toxic stuff creeps in where least expected and I get zapped and this is were it gets interesting for me. I work for a Chiropractor, who is also a very good friend and very supportive of me regarding the Celiac. He and his wife researched right along side me so that they would know what I was dealing with. (They gave me a beautiful goodie basket for Christmas filled with all kinds of delicious gluten free products that they carefully shopped for.) Because it is available to me, I frequently receive chiropractic adjustments, especially when I am having hip and low back pain. After being glutened a little over a week ago, I began having severe low back/hip difficulties. Today, after yet another adjustment for the same problem, the doctor told me he had been noting over this past year every time I had had this problem as well as whether I had recently been glutened. With every single occurrence there has been an episode of glutening.

Not necessarily significant info for most of you, but it is interesting to see it documented in my own history and not just an anecdote or symptom listed in a book somewhere. The Dr. (my boss) is guessing that along with chemical changes that take place in the body because of the gluten which may cause instability in the muscles and tendons around the joints themselves, that referral pain from the gastric distress and bloating that occur may also cause a shift in the spine, throwing the hip/pelvis off balance.

I can so relate! My chiropractor thought I had a herniated disc due to all the extreme symptoms I was having at the time. I literally crawled into the office on my hands and knees! But low and behold HE is the one that figured out I was allergic to wheat, and once I stopped eating it (I was already soy and dairy free) my back ache went away!!!

However, whenever I get an accidental dosing of any of my allergens I get HORRIBLE low back and rib pain. Its awful and totally debilitating....

So I know what you are talking about :-) Hurray for Chiropractors as mine figured out my wheat allergy AND fixed my back ;-)

Stefani

ang1e0251 Contributor

I had tremendous shoulder pain for years. Acupuncture gave me temporary relief but the pain persisted. I assumed I had arthritis or bursitis. I finally had to take Alleve every day to function and sleep but it would still wake me at night.

I went gluten-free and surprise, no more pain! I didn't start the diet for that and I was floored to find out it completely took away the pain. You're right, it reoccurs when glutened. If someone would have told me that, I wouldn't have believed it.

I'm glad you've figured it out.

angieInCA Apprentice

I had been suffering with lower back and left hip pain for about 3 years before going Gluten Free.

After many MRI's and X-Ray's my Dr's could find no reason for the pain and thought that I might have small Synovial Cysts in the spine and hip joint. I was told the only cure would be to operate and they wouldn't even consider it till the pain was so bad that I could no longer walk. I was told I would probably end up in a wheel chair by the time I was 55. The pain had gotten so bad that the only sleep I was getting was by chemical assistance and I was living on anti-inflammatories just to be able to function through the day.

In Oct. I went gluten-free and within 3 weeks my hips and back were pain free. My Dr's were astounded. One still doesn't believe it was the Gluten causing the problems <_<

Now when I get Glutened the pain comes back with-in 24 hours and stays with me for a couple of days.

I also had pain in my hands and feet which has now disappeared but re-occures when Glutened.

*lee-lee* Enthusiast

same here...i had hip/joint pain for a year before figuring out celiac. within 4 months of going gluten free, i don't have any more pain!!

silk Contributor

Wouldn't it be interesting to know (although you would probably never get any member of the medical field to admit a mis-diagnosis) how many people have had gallbladder surgery, treatment without result for joint pain or low back pain, treatment for IBS, Crohn's or Fibromyalia when in actuality, the person's problems stemmed from Celiac disease? Before we found out what was wrong with me we were checking into gallbladder, etc. I started to follow a gallbladder diet that I found on the net and actually began to feel a bit better. Weird stuff on the diet but most notably, the diet calls for no wheat or breads, potatoes, etc. My husband has a lot of low back and joint paint and wakes at least once every night because he is hurting. He is very supportive and knowledgable about Celiac and eats a lot of gluten-free stuff but does have his cookies and milk and regular breads, etc. For as much as he knows about the disease and it's symptoms, because he does not have the GI issues, he is not attributing his pain to Celiac. Not saying that he has it, but it would be interesting to see him give it a go for several weeks to see if things would change.

Amber M Explorer
same here...i had hip/joint pain for a year before figuring out celiac. within 4 months of going gluten free, i don't have any more pain!!

I also have had lower back pain for years with no diagnosis other than I have my last lower two vert. somehow fused, they think a birth defect since I never had surgery. Since gluten free, the only time I have a bad back ache now is when I have been glutened too. My daughter has spondilosis of the spine, which can be caused by celiac I have read. I firmly believe it causes many symptoms we are not even aware of.


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cyberprof Enthusiast
same here...i had hip/joint pain for a year before figuring out celiac. within 4 months of going gluten free, i don't have any more pain!!

Mee Three! I had been diagnosed with Degenereative Disk Disease in my low back. If I did yoga daily I would have less pain but usually took ibuprofen every day for the pain.

That (along with my plantar faciitis) went away within a month of going gluten free. Mine doesn't come back with mild glutenings and I haven't (knock on wood) had a major glutening. I'm very happy!

silk Contributor
Mee Three! I had been diagnosed with Degenereative Disk Disease in my low back. If I did yoga daily I would have less pain but usually took ibuprofen every day for the pain.

That (along with my plantar faciitis) went away within a month of going gluten free. Mine doesn't come back with mild glutenings and I haven't (knock on wood) had a major glutening. I'm very happy!

I've been glutened twice in the past two weeks and my lowback, (sacrum) and hip hurts so much that I'm wondering if I'll ever walk upright or sit comfortably for more than a few minutes at a time ever again. Eating rice cereal for the next three months just to make sure this doesn't happen again! :(

silk Contributor

Update: The pain I was having was not responding to the chiropractic adjustments so my chiropractor sent me to my family M.D. for an anti-inflammatory med hoping that once the inflammation was under control, the adjustments would take care of the structural problems. Family m.d., who dx'd me for the celiac disease, would not provide the meds. He did a few simple physical tests, diagnosed me as having a frozen sacro illiac joint and told me that three weeks was not a very long time to suffer from that condition and that it would resolve itself and if not, I should get back to him in another month and he would refer me to a physical therapist!. Said that he did not feel that anti=inflammatory agents ever really did any good. I explained my thoughts on the pain/problems being preceeded by the getting glutened and he poo-pooed that theory with the statement that 'even if you did get glutened, that's a digestive issue and should not be related to anything else and that once the food had gone through the digestive system the problem would be over and not last for 3 weeks.

The problem got so bad that by yesterday a.m I could hardly move and my husband had to dress me and take me to the hospital where they gave me nice drugs which were enough to curb the pain and relax the muscles so that when I got adjusted things actually moved and I am feeling somewhat better today. However, the nurses and docs that I saw in the e.r. were appalled that my family dr. would not prescribe an anti-inflammatory agent and that he wanted me to wait another month, in pain, before doing anything. That is taking the 'take two aspirin and call me in the morning' statement to a whole new level of ridiculous!

Obviously, I will be finding another Dr.

ang1e0251 Contributor

I am also appalled that he wouldn't prescibe anti-infammatories, my experience with dr's is that they hand them out like candy. The poo-pooing, yeah, I've heard that before. My dr asked me what the symptoms of my last glutening were and then laughed when I mentioned the last one in my feet. He said that's going too far!!

Frankly good luck finding a GP that get's it. They usually only have a minimal amount of knowledge of celiac disease, IMO. I don't rely on them for the info, that's why I'm here!!

tarnalberry Community Regular

a "frozen" SI joint *can* cause that much pain. I am prone to that problem due to hypermobility. quite honestly, I'd either call the dr. back and say "write me a script for PT right now" or get another dr. a good PT - along with the chiro, depending on the type of chiropractic - should be able to help you manage and strengthen the appropriate muscles in the pelvis to reduce the chances of this occuring. of course, this isn't quite like treating a sprained ankle; it takes some skill.

celiacsoyfree Newbie

This is just my theory to hip/leg pain in celiac's and others.

#1 In Chinese medicine, the IT band/hip area is part of the meridian that is liked to the digestive system. (liver, stomach, spleen, gallbladder, intestines) When that area gets "sticky" i.e. glutenized, blocked, imbalanced, one feels the pain in the hip, IT band, low back, joints.

The blockage of chi needs releasing and the digestive tract cleansing.

acupuncture/massage

yoga, strecthing the hips and IT band.

walking

hot bath/sauna

yogurt

colostrum/whey protein

apple cider vinegar treatment (clears your sinuses too. you may notice sinus issues when the intestines is sick)

lemon juice/water

fiber (in food or supplements)

#2 Since celiac disease and getting glutenized causes malabsorbtion and stress, the body does not get enough nourishment. Extremity pain, neuropathy, paratheses, and aching in old injuries results from a need for b12 and extra vitamins.

Again, this is my opinion based on just my experience and research I've done.

I think gentle exercise like walking, yoga, swimming, physical therapy, stretching help release the blocked chi. If you're in pain and you sit there and let it fester, it has no where to go but to circulate in your body.

Helping the body to rid itself of the toxins through diet and homeopathic medicine will help the body recover faster.

Recently, I came off celebrex and experienced horrific aching in my hips/IT Band. Celebrex effects the GI tract. It was also one less thing for my liver to deal with. Now all this junk needed to come out and I took care of it with specific low back/hip/IT band stretches and diet.

good luck!!!!

  • 4 weeks later...
Crystal Brown Rookie

Ditto on the low back pain! :P

I have Scoliosis, Kyphosis, Degenerative Disc Disease and Arthritis - once going gluten-free the low back pain miraculously subsided.

Interesting thing was, when I was drinking Starbucks Frappuccinos up to three times a day (after my dx), I was still having intermittent intestinal cramping and severe back pain. Oh and add that to the menstrual cramps, eeeeeeeyikes, I was a mess!!

Luckily, I found out about the Frapps - this was only after landing in the hospital because I collapsed at the eye doctor (that's a whole different story).. but in the hospital they said that I was being glutened by something. Light bulb when on and I was like the frapps!! I guess they can't avoid the CC in those blenders - even though they had a dedicated blender for me - it still wasn't enough.

So, long story shortish, anytime I am severely contaminated I get the following:

- hot flashes

- severe cramping

- the big D or C - usually both

- slight hallucinations (I attribute this to becoming overheated)

- double vision

- peripheral neuropathy

- bone pain

- lower back pain

- migraines

If it is slight contamination from CC:

- lower back pain

- intestinal cramping

- migraines

- peripherial neuropathy

So, you can add me to the gluten-causes-me-back-pain-train :D

julirama723 Contributor
This is just my theory to hip/leg pain in celiac's and others.

#1 In Chinese medicine, the IT band/hip area is part of the meridian that is liked to the digestive system. (liver, stomach, spleen, gallbladder, intestines) When that area gets "sticky" i.e. glutenized, blocked, imbalanced, one feels the pain in the hip, IT band, low back, joints.

Oh my gosh, I don't know if this can be proven, but I DEFINITELY think you're on to something!

I began low-carbing a few years ago, and didn't eat any grains for about 8 months. I felt fantastic! About 7 months in to the diet, I started running regularly, and had no problems. A month later, I reintroduced grains (I would eat wheat most often, sometimes oats) and also began having serious problems with my right IT band. I was in so much pain and I was so stiff that I had to give up running for many, many months. (Even though I was stretching and doing yoga regularly!)

When I finally started running again, it was after a period of being grain-free. In fact, I started training for road races and for a marathon. I felt great at the beginning, but guess what I introduced back into my diet during training? Grains. The pain was not as severe as I was doing about 7 hours of yoga per week, but I still ached each day and always had to watch that leg.

It could be coincidence, but I nearly fell out of my chair when I saw your post!

  • 11 months later...
BoiseNoise Newbie

I have not been diagnosed as celiac or gluten-intolerant, but was trialing a gluten-free diet because of my mom's recent diagnosis, and because of a few issues that I have had.

Anyway, after having been carefully gluten-free for about three weeks, I started having some fairly severe lower-back pain that seems to come and go intermittently, almost at random. It's primarily in my lower back, but sometimes also shows up in my left hip joint. I've tried yoga exercises, and I've also been drinking cranberry juice (since my dad has kidney-related back pain and suggested that). Nothing is working.

A couple of days ago, I "cheated" on my gluten-free diet at a favorite Chinese restaurant. Then I just went on and ate whole-grain cereal for breakfast, a sandwich for lunch, etc. . . . and my back pain seems to have gone away! I was wondering whether there could be a relationship of some kind. The whole time that I've been trying to eat gluten-free, I've felt a bit malnourished, as if my stomach wasn't quite right, and it just felt as if something was "missing." After reading the posts above, I'm thinking that maybe the lack of whole wheat caused a change in my digestion that then caused the back pain.

Really, I'm confused, and don't know what to think! This back pain thing is new to me, and its appearance did seem to coincide with the start of a gluten-free dieet. :(

Canadian Girl Apprentice

I was diagnosed approx 6 weeks ago, and went gluten free. about 2 weeks abo i started having terrible pain in the left side of my back, so bad that i couldn't move in the morning. it was terrible, I wrote a post about it and was told that it was possible cc or maybe nightshade veggies, or even milk or soy. i called my dr and she is doing a physical on my back in a few days and will send me to see a specialist. It seems to have gotten a little better thankfully but could it poss have been from one thing i ate that had gluten in it, and lasted this long? has anyone noticed a trend of the pain occuring in the LEFT side of your back?? That seems to be what I have been reading, and that's where it is in my back. it's on the left side, below my shoulder but above my hip, and feels like it's right in the center of my body, like massage wouldn't be deep enough to reach it. I was talking to a friend who's a nurse who told me not to take this too far and that i'm just getting older... I'M 23!!!! :angry: she seems to think that it's all a joke and that i should be careful what i eat but that not much will happen if i do eat gluten! we had dinner last weekend and there was chicken broth in something that made me bloated.. i think it was the chicken broth??? and she got mad at me for saying that it bloated me!!! sorry kinda went off course here but just needed to vent! <_<

bluebonnet Explorer

I was diagnosed a year ago in November. While I did not go through the biopsy testing, I have type 1 diabetes, Raynaud's Phenomenon, Apthous Stomatitis(mouth ulcers) and all of the GI problems that most of you have, anemia and failure to thrive as a child, hip/joint pain, positive dietary response to a gluten-free diet, etc.. I am 49 years old and have had most of these for most of my life, so my M.D., although he would have liked me to remain on gluten long enough to do the biopsy, is operating under the assumption that I have Celiac disease and not just an intolerance.

Since being dx'd last year, I have remained faithful to a gluten-free diet but as most of you know, sometimes the toxic stuff creeps in where least expected and I get zapped and this is were it gets interesting for me. I work for a Chiropractor, who is also a very good friend and very supportive of me regarding the Celiac. He and his wife researched right along side me so that they would know what I was dealing with. (They gave me a beautiful goodie basket for Christmas filled with all kinds of delicious gluten free products that they carefully shopped for.) Because it is available to me, I frequently receive chiropractic adjustments, especially when I am having hip and low back pain. After being glutened a little over a week ago, I began having severe low back/hip difficulties. Today, after yet another adjustment for the same problem, the doctor told me he had been noting over this past year every time I had had this problem as well as whether I had recently been glutened. With every single occurrence there has been an episode of glutening.

Not necessarily significant info for most of you, but it is interesting to see it documented in my own history and not just an anecdote or symptom listed in a book somewhere. The Dr. (my boss) is guessing that along with chemical changes that take place in the body because of the gluten which may cause instability in the muscles and tendons around the joints themselves, that referral pain from the gastric distress and bloating that occur may also cause a shift in the spine, throwing the hip/pelvis off balance.

wow...this was very interesting to me! i have low back and hip pain from degenerative changes (in my mid 30's) and i'm hoping as i recover (into week 5) these improve (atleast i was told the pain could go away but the spinal damage is beyond repair).

jackay Enthusiast

I get very tight muscles in my lower back and burning pain in my upper back muscles right below my shoulder blades. The pain definitely seems to be food related. I am intolerant to many foods besides gluten and am having a hard time determining what is all bothering me. I am 100% convinced that all my back problems are food related.

I was getting chiropractic adjustments for a long time but that wasn't helping anymore. If the pain gets too bad, I'll start in again with that. I do find that laying on my back with a rolled towel under my hips for about 15 minutes really does help the lower back pain. I've read that it puts more of an S curve in the spine. I haven't found anything other than hot showers that helps with the upper back pain.

jerseyangel Proficient

I've been reading all of your experiences with interest. Before being diagnosed for probably 2 years I would wake up with severe hip pain--my right hip would hurt so bad that it was difficult to turn over in bed. I would get up, walk around--slowly at first, and take a warm shower. The pain would subside, and start all over again the next morning.

I didn't equate it with what was going on with my digestive tract, but once I went gluten-free, I never got that hip pain again. It's been almost 5 years, and never once since I went gluten-free have I felt it.

katinagj Apprentice

I was diagnosed a year ago in November. While I did not go through the biopsy testing, I have type 1 diabetes, Raynaud's Phenomenon, Apthous Stomatitis(mouth ulcers) and all of the GI problems that most of you have, anemia and failure to thrive as a child, hip/joint pain, positive dietary response to a gluten-free diet, etc.. I am 49 years old and have had most of these for most of my life, so my M.D., although he would have liked me to remain on gluten long enough to do the biopsy, is operating under the assumption that I have Celiac disease and not just an intolerance.

Since being dx'd last year, I have remained faithful to a gluten-free diet but as most of you know, sometimes the toxic stuff creeps in where least expected and I get zapped and this is were it gets interesting for me. I work for a Chiropractor, who is also a very good friend and very supportive of me regarding the Celiac. He and his wife researched right along side me so that they would know what I was dealing with. (They gave me a beautiful goodie basket for Christmas filled with all kinds of delicious gluten free products that they carefully shopped for.) Because it is available to me, I frequently receive chiropractic adjustments, especially when I am having hip and low back pain. After being glutened a little over a week ago, I began having severe low back/hip difficulties. Today, after yet another adjustment for the same problem, the doctor told me he had been noting over this past year every time I had had this problem as well as whether I had recently been glutened. With every single occurrence there has been an episode of glutening.

Not necessarily significant info for most of you, but it is interesting to see it documented in my own history and not just an anecdote or symptom listed in a book somewhere. The Dr. (my boss) is guessing that along with chemical changes that take place in the body because of the gluten which may cause instability in the muscles and tendons around the joints themselves, that referral pain from the gastric distress and bloating that occur may also cause a shift in the spine, throwing the hip/pelvis off balance.

I honestly wish I had seen this a year ago. I've been suffering from terrible hip and lower back pain for years. I am only 22 so the fact that I have had to use a cane to walk frequently in the past 2 years told me there was SOMETHING wrong. Xrays showed nothing. I went to a good chropractor after finding out I had slight scoliosis, and whle it helped, I was always plagued again later by the hip pain(and still had to use a cane to walk quite often). It would be like my hip was catching on my spine. Horrible shooting pain. If I moved my hip at all I would end up screaming. It was terrible! My upper back pain went away after getting my spine aligned, but since the hip pain never left I knew there was something still wrong. Only the other day did I realize that my hip pain is completely gone since going gluten free. My lower back pain is for the most part gone. Just a little bit of pain left but I am sure that it will leave soon as I can feel it getting better. Anyways, I just wanted to say you are not alone! And its nice that there is someone I can relate to in that aspect. My family was starting to think I was faking it...lol

BoiseNoise Newbie

I figured out what was going on with my back pain! It was, indeed, indirecty caused by going gluten-free, and I stumbled onto the reason why: people with impaired kidney function of any kind, even mild, should avoid high-protein diets. By going gluten-free and cutting out breads, pasta, etc., my diet inadvertently moved to a much higher protein ratio (after all, you have to eat SOMETHING!) The result was that my kidneys started "acting up" and causing a lot of pain.

I am back on a normal "glutenous" diet now. My back pain went away almost instantly and has not recurred, and I feel much better overall. I guess this illustrates the folly of trying to go gluten-free without a definite diagnosis that requires it. ;)

BTW, I'm not saying that gluten-free diets are necessarily bad for your kidneys. More fruits and vegetables and less protein, and I would probably have been fine. I'm just posting what I discovered in case it might help anyone else who finds themselves in a similar situation.

  • 1 year later...
Anchi Newbie

Oh my gosh, I don't know if this can be proven, but I DEFINITELY think you're on to something!

I began low-carbing a few years ago, and didn't eat any grains for about 8 months. I felt fantastic! About 7 months in to the diet, I started running regularly, and had no problems. A month later, I reintroduced grains (I would eat wheat most often, sometimes oats) and also began having serious problems with my right IT band. I was in so much pain and I was so stiff that I had to give up running for many, many months. (Even though I was stretching and doing yoga regularly!)

When I finally started running again, it was after a period of being grain-free. In fact, I started training for road races and for a marathon. I felt great at the beginning, but guess what I introduced back into my diet during training? Grains. The pain was not as severe as I was doing about 7 hours of yoga per week, but I still ached each day and always had to watch that leg.

It could be coincidence, but I nearly fell out of my chair when I saw your post!

I don't think it's a coincidence. For at least 5 years I have had off and on: lower back pains, stabbing pains in hips and legs, shin pains, tingling in my feet, pain in hip area, shoulder pain (for many many years) all on the right side. My right leg often felt like it wasn't my leg, sometimes I thought I we getting appendicitis when I had sharp pains in right lower abdomen...other symptoms...around when I started having hip pain I broke out in hives for the first time ever after eating pizza. For years I have suffered from fatigue, pms where my legs felt like lead, interrupted sleep, foggy brain, Raynaud's syndrome. I have had thyroid checked, hip x-ray, chiropractic work (which help...she gave me a digestive enzyme which helped at the time), physical therapy (that helped a lot with hip pain), MRI on hip, internal sonogram (thinking it was my ovary..even had a laparoscopy with no results). The only thing anyone found was that I was anemic. All these doctors and NO ONE EVER MENTIONED GLUTEN INTOLERANCE!!! Makes me so mad. It took a friend who's daughter has celiacs to suggest a gluten-free diet...WOW! Within 3 days I felt huge changes. I had drenching night sweats that seemed to be detoxing my body. I slept solid, all night! and so many pains went away. I started feeling an energy I never had. I even started running, which I've never done. I only drank one cup of coffee instead of drinking cups all day long. I have not yet been tested..trying to find a doctor who understands all this. Everytime I eat wheat now I feel sick for 3 days, as if I'm getting a cold, can hardly walk, have sharp pains in right hip and leg, numbness in right heel, and have night sweats. Why do Doctors not understand the problems of gluten??? I wish someone had told me this years ago. My mother had these same pains when she was my age and Doctors could find nothing. Later in life she had severe arthritis in both hips and had a hip replacement. She died a year ago just before her second hip replacement, and was in constant pain and anxiety. If I'd known what I know now I think she would have been much better if she were wheat free. Her sister died of Wegner's (sp) an autoimmune disease...could that have been caused by gluten? I wonder if my family has the gene for wheat intolerance or Celiac. We originate from Northern France.

I'm now reading WHEAT BELLY by Dr. William Davis in which he writes about how wheat has become so genetically modified it is probably causing many of todays diseases and digestive issues. I highly recommend this book!

Anchi Newbie

I get very tight muscles in my lower back and burning pain in my upper back muscles right below my shoulder blades. The pain definitely seems to be food related. I am intolerant to many foods besides gluten and am having a hard time determining what is all bothering me. I am 100% convinced that all my back problems are food related.

I was getting chiropractic adjustments for a long time but that wasn't helping anymore. If the pain gets too bad, I'll start in again with that. I do find that laying on my back with a rolled towel under my hips for about 15 minutes really does help the lower back pain. I've read that it puts more of an S curve in the spine. I haven't found anything other than hot showers that helps with the upper back pain.

I have had burning pain in my upper right shoulder below the blade for years. I have a huge knot there and have had it worked on off and on over the years. I noticed since I went gluten free it is not nearly as painful. I also used to feel a lot of tension in my upper back and had a lot of anxiety. gluten-free has cleared that up too, along with many many other issues. Just need to find a Dr. who understands this. I sometimes wonder also if there are other foods that bother me, because I think I'm being really good about avoiding gluten, and then suddenly the symptoms return.

  • 5 months later...
CiaraPearle Newbie

Explain this one to me. I have been gluten free for a year, and all of the sudden I have this horrible joint pain, hips, knees, shoulders but I had these before I went gluten free and I have eaten anything with gluten in it lately so I don't know why it would be like this.. I am seriously considering going to a bone specialist but a coworker recently said that it might be something in my stomach causing this reaction, could I possibly be having other allergies?

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    • 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.
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