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Awful Lower Back, Leg, And Hip Pain


tka

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tka Apprentice

Since being diagnosed 2 months ago, I have had awful pain in my lower back, hips and legs, even my feet almost daily, particularly upon waking or after siting for a few minutes. I had trouble getting gluttened about once per week for the first 4 weeks or so, but seem to have done better the last 4. Tummy still rolls on occasion and gas some. Went thru a period awful exhaustion, but that is some better too. I am not completely exhausted every day like I was, but still can't make it thru the day without fading. I'm worried about the pains in my back and hips. Are they symptoms too, or could I be developing something else too?


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nvsmom Community Regular

Is it sciatic pain?

tka Apprentice

Is it sciatic pain?

I don't think so. Burning, achiness, stiffness in lower back. Achiness, stiffness in both hips. The pain in my foot is around a site that I had surgery 7 or 8 years ago. It's aching and stinging. I feel like something's attacking weak spots in my body and lie I'm 100 years old.

AlwaysLearning Collaborator

I personally think that getting tested for vitamin deficiencies should be a part of any gluten allergy/celiac diagnosis. They are really common and are easy to find with blood tests.

I know that leg pains are associated with some deficiency, though I forget which one. Neuropathies can be caused by B12 deficiencies.

My aches and pains, though not as bad as yours, don't seem to be related to gluten directly, though I don't doubt that the damage and malnourishment that gluten caused could have been a factor. But they really don't know what affect celiac can have on the tendons and ligaments in joints.

There are a bunch of other autoimmune issues that seem to be more common in those with celiac. Sorry I don't have any other ideas for you.

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    • trents
      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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