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Back Pain Associated With Celiac?


Giwi777

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Giwi777 Newbie

Hi all! I am new to this forum, and two weeks fresh from my celiac diagnosis. The only symptom I can recall prior to my diagnosis was the past three months of extreme fatigue and my stomach would swell larger than a 10 month pregnant woman with twins if I ate oatmeal. I took naps right after work everyday which was far from my normal bubble of energy I was prior. One thing I have learned in my reading and research about my new diagnosis is that there are MANY symptoms of celiac, one including back pain. I have been significantly overweight And even with exercise and what I thought was a proper diet, I couldn't lose a pound. With that said, I realize a lot of my back pain could be all of this excess weight, but the pain scares me and I am curious if anyone else has experienced back pain? The pain I experience is all throughout my back, upper, lower and middle. Could this be part of the celiac? Any opinions and stories will be greatly appreciated!


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moosemalibu Collaborator

I am thinking that the inflammation in the gut alone could probably cause pain that could be interpreted as back pain. I have had back pain for a lot of my life - the only thing that helps is working out my back specifically with weights. My weight lifting and celiac diagnosis kinda coincided around the same time so its possible there was some overlap. Hopefully with your gluten free diet now things will improve for you (and yes - some experience weight loss after diagnosis and going on a gluten free diet... some however do gain weight. I was one that lost weight)

ravenwoodglass Mentor

I had pretty severe back pain pre-diagnosis but then I had severe pain pretty much everywhere. I am now for the most part pain free, unless I get glutened.

Do be sure to drop dairy for a bit as many of us have problems with that until we heal. That may help with some of the bloating. You can reintroduce it after you have healed for a bit.

Celiac does cause inflammation so hopefully your discomfort will ease a bit as you heal. Be sure to read the Newbie 101 thread at the top of the Coping section as it has a lot of good info on what we need to do to be truly safe.

Welcome to the board and I hope you heal quickly.

etbtbfs Rookie

The first symptom of celiac I got was backpain that put me in chiropractor-land for years. After 24 years of this, I got a diagnosis of degeneration at L5-S1 and herniation at L4-L5. Celiac causes deficiencies that cause this. In my case, the key deficiencies were hypothyroid (via Hashimotos) and hypoprotein. After going gluten-free, got pain relief by fixing thyroid (T3+T4) and protein (free essential amino acids blend). Use many other supplements too for insurance.

captaincrab55 Collaborator

Giwi777,      When was the last time your Vitamin D was checked??      I had many pain issues when mine was very low.    

Giwi777 Newbie

Thank you for everyone's replies! I have not yet had my vitamin D checked, however, I will ask the doctor to order that in some lab work as well. I do know my iron is very low, first indication of celiac to the doctor prior to doing the scope. I do hope I lose weight after being gluten free for a while although I do not expect it to fall off all on its own. What started this entire journey was what my ob /gyn thought may have been kidney stones, followed by a CT scan thay indicated no stones but enlarged lymphnodes in my abdomen. Is it safe to assume that the enlarged lymphnodes could be from the Celiac? I worry a lot and I'm fairly afraid, who am I kidding, I am very scared of the unknown and worst cases.

I will also check out the newbie section on here to learn more and hopefully try to remove dairy while I am healing as well.

I am always open to suggestions, opinions, brutal honesty, etc.

Thank you again for your help all!

squirmingitch Veteran

I had severe back pain in all 3 sections of my back. I had back pain since I was early teens which in hindsight I now know I was celiac that far back (58 now). I no longer have any back pain at all. None. I had pain all over my body - screaming, burning, raw, massive pain. It's all gone now.


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ravenwoodglass Mentor

In relation to the lymph nodes I can only answer with my own experience. I had enlarged nodes in both my neck and groin prediagnosis. Doctors never really investigated the cause, I think because I had such severe DH they attributed the enlarged nodes to the lesions. It took a long time for the nodes to go down but they eventually did.

As far as dairy goes it would be a really, really good idea to eliminate it for a bit. I also found it helpful to eliminate soy and after adding soy back in discovered that it would cause a great deal of joint pain. You may want to eliminate at least soy protein also for a while. Once you are feeling better add them back in one at a time and watch for any reactions. When you add dairy back in start with lactose free dairy like hard cheeses and yogurt and if you are okay with those then go ahead and add back in softer cheeses and milk. Some of us can react to the protein, casien, in milk even after we have healed enough to digest lactose. I used ghee for a bit when dairy free but found I did tolerate butter which is low in both casien and lactose. For myself after I had healed well I found I could even eat ice cream with no issues which was something I had avoided for years and years.

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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