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LoisArbuckle

Still Having Leg Pains, When Will They Go Away?

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6 weeks gluten-free and I'm still having leg pains. ALL of my other health issues have gone away, why not this one too?

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Ah, Lois, it is not always that easy. Sometimes the symtoms go away, sometimes they don't, sometimes they just take a while. Often it depends on how long you have had them. I do hope that is the case for you and that eventually you will get relief.

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What type of pain is it? Nerve related pain may be helped by taking a sublingual B12. If it is more a stiffness a referral from your doctor to a physical therapist may provide relief. Something that also may give you some relief is acupuncture, I was really surprised how much it helped with my arthritis pain before I was diagnosed and the diet took care of it. It can take a while to heal and the fact that your other issues have resolved is a good sign. That said though not everything is gluten. Some leg pain can be brought on by poor circulation, for one example. If it doesn't ease up make sure you ask your doctor about it.

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My lower back/pelvic bone pain lessened considerably after a few weeks on 1800 Mg of Calcium and Vitamin D. I was taking Nature Made gluten-free Calcium/Magnesium/Zinc with D and their multivitamin. It was/is a bone ache kind of pain. I don't know if it was from the vitamins or coincidental. If I forget my vitamins for a few days, it seems to come back some.

I hope your legs heal up more. I'm still having lots of my old symptoms at 11 weeks. Happy Turkey Day!

SGWhiskers

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Yes it depends on what you mean by leg pains. I use to get a lot of achey leg pains and particularly restless legs at night which drove me mad. I realised though before I went gluten-free that it was due to my digestion. When it was bad I would get the pains, when it was ok my legs were ok.

After going gluten-free and dairy-free it settled down a lot and I was also low-carb as, like many with digestive issues I have a problem digesting them and undigested carbs just ends up feeding rogue bacteria in the gut that compounds the problem.

I regularly see many on here who find that gluten-free on its own does not solve everything and is only part of the problem and they have issues with other foods. Some of us are following the Specific Carbohydrate Diet and finding good relief from it.

There is a thread on it in the 'Other Food Intolerances and Leaky Gut Syndrome' section if you want to know more.

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It feels like growing pains. That's what I always called them growing up. Extremely achy. I would hit my legs so hard they would bruise. I've had this problem for as long as I can remember.

If it is still just a gluten issue, could there be a possibility I'm still eating some form of gluten? If so, why have all of my other problems stopped.

Would it be crazy to say that different forms of gluten cause different problems?

For example: Foods obviously containing gluten like bread, battered foods, or pasta cause pain in my chest within 15 minutes of eating it. So much that I vomit. If I do not vomit and am able to keep it down, my legs and head will hurt along with bad gas, bloating, and acid reflux.

Simple things like candy that you would never think contained gluten or wheat cause headaches and leg pains hours or a day later.

Do I sound crazy?

Thanks guys, for all your help. I'm doing the best I can to feel better. Hope all is well with everyone.

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I want to reiterate what several others said. Because of the intestinal damage (which can take up to a year to heal) you haven't been absorbing nutrients. Were you tested to check for any deficiencies? Anyway, most newly diagnosed types need calcium, magnesium, D3, and B12 at the very least--and all of those can be helpful for leg pain--cramping or nerve pain. Hope you feel better.

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Thanks for all your suggestions - Which multi-vitamin would you recommend?

I really like the Reliv products. They are pretty expensive though.

I have never been tested for any deficiencies. Should I ask my doc to do that. I need a good doctor. My doc back home in Mobile sort of diagnosed it. And I did the rest. He was awful, he laughed at me. I now live in Birmingham, AL - know of any good doctors near me?

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Thanks for all your suggestions - Which multi-vitamin would you recommend?

I really like the Reliv products. They are pretty expensive though.

I have never been tested for any deficiencies. Should I ask my doc to do that. I need a good doctor. My doc back home in Mobile sort of diagnosed it. And I did the rest. He was awful, he laughed at me. I now live in Birmingham, AL - know of any good doctors near me?

Ya, you need a good doctor. Check with largest hospital in your area for a listing on doctors. I would have the vit. dif. tests too. My constant leg "charlie horses" are almost gone (unless I slip) by taking the magnesium that my Allergist recommended.

It's funny you saying the leg growing pains as far back as you can remember. I jarred my memory of having them sooo bad as a kid. Funny we were making yeast bread every two days during all that time. It made me remember that!

You are not crazy, believe me, I can't tell you all of the stuff that I now know is related to the gluten! I find it very amazing. It just blows my mind! Good Luck

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I don't take a multivitamin because I can never find the combination I want--everything is separate. I take BCDK sometimes A and calcium/magnesium. You have to be awfully careful about reading labels. You might google multivitamin on this forum and see what people have mentioned. There is a gluten free vitamin section on this website, over on the left margin.

You can also find doctor information by googling on this forum, or post a new thread saying doctor in Birmingham in the title.

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Leg pain, specifically a 'nerve' pain that went along the top of my leg from the top of the thigh to near the knee was 'mid problem', 'mid recovery' problem.

If I mapped out my symptoms as I got worse, then figured out I had Celiacs, then got better I would go up and down the list.

To me leg pain is a mid to early recovery problem.

Achy legs, especially in the lower part of the leg is a very early recovery problem. If I accidentally have a small amount of gluten its a 2-3 day problem. Funny thing is if I have a lot of gluten that problem only surfaces on recovery, never on the way down.

I just tried the B12, actually a multi vitamin B and what an amazing response I've had to it.

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Check your level of Vitamin D and see if you can get a bone density scan. Low level vitamin D can lead to bone pain and problems with calcium absorption.

Good luck!

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Another thing I've noticed since taking the B12 is that same growing pain in my arms and sides of my stomach area.

B12 is supposed to help in deep muscle tissue growth. I've always been thin and if I work out I tend to get more toned than to actually build muscle.

It hasn't bothered me since it does feel a lot like a growth pain . I'll have to check and measure over the next few weeks to see if working out with the B12 makes more of a mass impact.

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It feels like growing pains. That's what I always called them growing up. Extremely achy. I would hit my legs so hard they would bruise. I've had this problem for as long as I can remember.

If it is still just a gluten issue, could there be a possibility I'm still eating some form of gluten? If so, why have all of my other problems stopped.

Would it be crazy to say that different forms of gluten cause different problems?

For example: Foods obviously containing gluten like bread, battered foods, or pasta cause pain in my chest within 15 minutes of eating it. So much that I vomit. If I do not vomit and am able to keep it down, my legs and head will hurt along with bad gas, bloating, and acid reflux.

Simple things like candy that you would never think contained gluten or wheat cause headaches and leg pains hours or a day later.

Do I sound crazy?

Thanks guys, for all your help. I'm doing the best I can to feel better. Hope all is well with everyone.

One of my son's symptoms was terrible leg cramps, especially at night. Everyone told me they were growing pains, even the doctor at first. After he was dx and was gluten free for a few weeks they went away and he hasn't had any since.

I also used to have achy leg pains along with restless leg. Going gluten free solved those problems. I can tell when I have accidently ingested gluten because my legs begin to hurt. I also seem to react differently to different gluten items. When I used to eat 100% whole wheat pasta I would be in the bathroom within 30 minutes and be sick all day/night. But if I would eat something less obviously gluten filled I would have headache, leg pain, and fatigue but not necessarly be running to the bathroom that quickly. That would take a little longer to develop.

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just my personal experience....

for a year before i was diagnosed, i had pretty bad hip joint pain. finally, only after being gluten free for 3-4 months my leg pain subsided. in addition to the joint pain, i had that achy "growing pain" feeling. now it seems like it only flares up when i'm CC'd.

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just my personal experience....

for a year before i was diagnosed, i had pretty bad hip joint pain. finally, only after being gluten free for 3-4 months my leg pain subsided.

I had this exact experience. My hip hurt so bad, especially when I was laying in bed that it was difficult to turn over. It's completely gone now.

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I had this exact experience. My hip hurt so bad, especially when I was laying in bed that it was difficult to turn over. It's completely gone now.

me too...sometimes i was lucky to get a few decent hours of sleep. walking was tough and also long periods of sitting the same position (like at work, in a meeting).

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Thanks guys, for all your comments. I don't feel so silly hearing that all of you have similar issues.

Anyone know if Reliv Classic is Gluten Free? I can't find any info on it except some opinions from some forums. I need a good vitamin and I know that one is a good one. My husband loves it.

I have noticed that it's not my entire leg that hurts anymore, it's now mainly my upper legs. And I do think it is much worse when I accidently get into some gluten.

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Thanks guys, for all your comments. I don't feel so silly hearing that all of you have similar issues.

Anyone know if Reliv Classic is Gluten Free? I can't find any info on it except some opinions from some forums. I need a good vitamin and I know that one is a good one. My husband loves it.

I have noticed that it's not my entire leg that hurts anymore, it's now mainly my upper legs. And I do think it is much worse when I accidently get into some gluten.

My upper right leg is bad right now. I have twitching and spasms in the right butt cheek and both legs. My lower right colon is acting up right now too. I know how it feels. I always seem to have all of it together. When the colon acts up, the rest comes on. I've gone over everything I ate latley, can't find a culprit. I had the night sweats all night last night. Went through 2 towels and had to change twice. That always seems to be along with the other stuff too.

Went to Doc. today, had full tyroid panel, ferrin, vit. B12 levels blood tests and will be scheduled for a colonoscopy. Yuk! We'll see what the results are.

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    • Aya, GFinDC has given you good advice.  Watch your CARBS they ferment and can cause bloating. This can be more pronounced after starting PPIs in some people because you have temporarily lowered your stomach acid which can make things worse for some people.  It is called Acid Rebound when people try to stop PPIs and why (at least) for short period of a couple weeks to a month your body begins to produce it's own stomach acid again.. ..things seem to get much worse. Here is a research link about it entitled "Gastric hypochlorhydria (low stomach acid) is associated with an exacerbation of dyspeptic symptoms in female patients" Dyspectic (dyspepsia) is the medical term for indigestion commonly known as acid reflux/bloating etc. https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 In fact if stomach acid was not the cause your heartburn  and instead say from stress then taking PPIs can make it worse. See this fox news article from 5+ years ago that explains it well. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html quoting from the article "It used to be thought that all GERD was the same—you give patients PPIs and they'll all respond," says Prateek Sharma, a gastroenterologist at the University of Kansas School of Medicine. "But we're finding that a subset of these patients don't have acid as a cause of their symptoms." and they note this in their article on NERD not GERD. quoting again. "Another guess is psychological stress. A 2004 study of 60 patients conducted at the University of California, Los Angeles, found that those with severe, sustained stress in the previous six months were more likely to have heartburn symptoms during the next four months." the standard treatment for acid reflux is to take PPIs and that is troubling for many who start them and cant' get off of them. they actually note this fact. quoting again. "The ones we worry about are the ones who don't respond to standard therapy," he says. "Then we have to figure out why they don't respond." and might actually be making thing worse for many people. quoting again. Aya read the whole article and links provided in this thread when you get  chance. "One 2004 study cited a 46 percent increase in GERD-related visits to primary-care physicians over a three-year period alone." sadly if they had just tested your stomach acid levels before putting you on PPIs many of your acid reflux symptom's might of have been avoided. they are now beginning to realize PPI's don't work for everybody and can make it (heartburn) worse in many patients. quoting again. "Gastrointestinal experts now estimate that 50 percent to 70 percent of GERD patients actually have NERD, and studies show they are more likely to be female—and younger and thinner—than typical acid-reflux sufferers. They are also about 20 percent to 30 percent less likely to get relief from acid-blocking drugs. But their episodes of heartburn are just as frequent, just as severe and just as disruptive of their quality of life, studies show." Ground braking research really but we have a long memory when it comes to treatment regimens.  And it will take a while for the medical field to catch up to this new research. even though this new research recognizes this is real phenomena doctor's are stumped about how to treat it. quoting again. "New research suggests that in many people, heartburn may be caused by something other than acid reflux. But gastroenterologists are often stumped as to what it is and how to treat it." Because they think it is too high to  begin with it doesn't fit their paradigm to think stress or low stomach acid could really be the trigger and never test your stomach acid before beginning you on PPIs. If you were tested you would of remembered because it traditionally involved swallowing a pill retrieved with  string know as Heidelberg Gastric acid test or similar test like the EpH test where a thin tube is inserted through your nose for 24 hours. here is a medline article about the esophageal pH test. https://medlineplus.gov/ency/article/003401.htm because it makes or effects our gag reflex most people feel uncomfortable doing it. so this step (test) is typically bypassed. . . .and the real pH of your stomach is never tested/measured. But we know it is low stomach acid (being misdiagnosed I think) really because we have studied this phenom before see early link posted  here again for convenience sake entitled "Gastric hypochlorhydria (Low Stomach Acid) is associated with an exacerbation of dyspeptic symptoms in . . . patients" https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 the article focuses on the results for women (I am/was not sure (can't remember) if you are women or not but men were also studied in this research. I hope this is helpful. ***this is not medical advice but I have found often when your stomach acid is truly NOT high enough is when we have most of our/your GI problems. I just try and encourage others to get tested. . . because if you don't test you'll never know. We have the endoscopy test for many of our other GI problems we also need to test our pH as well to rule out if is contributing to our other GI problems. ***this is not medical advice but I hope it is helpful. ******Maybe someone else can answer this??? Can you do pH testing with an Endoscopy and if so why is not typically done?? when an Endoscopy is performed thus killing two birds (proverbially with one stone (test). 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • Yeah you have to eat it til they are done with all the testing, backward part of this disease is the dia.

      There are 100s of symptoms with this disease, you probably have a few you have considered "Normal" for years, and after a year or so you will like a new you.

      Go ahead and read over the newbie 101 thread for now and prehaps start cleaning out the cabinets, tossing the CCed condiment jars, scratched pans, and getting some new ones.
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      A whole foods diet starting off is best, avoiding dairy, oats, for awhile, but I do have a list of gluten free products I update a few times a year with a new one.
      https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/  
    • Aya, I think your PPIs are triggering your dyspepsia medical term for indigestion etc. Often when our stomach acid get's too low we will have issues with CARBS. They ferment and cause bloating. Here is a couple article/links about it. You need to get off the PPIs if at all possible.  Try taking a H2 blocker for two weeks and then stepping off it two weeks between reduction in dosages all the while watching your trigger foods. Here is a link about "Gastric hypochlorhydria (low stomach acid) is associated with an exacerbation of dyspeptic symptoms in female patients" https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 taking betaineHCL can also help your digestion if your stomach acid is already too low from taking lansoprazol. see this topic in the pharmaceutical journal about it. https://www.pharmaceutical-journal.com/learning/learning-article/question-from-practice-management-of-hypochlorhydria/11120379.article?firstPass=false as to whether you have Celiac disease or not . ..you might not yet but if you keep taking PPIs you might develop it if you keep taking them for years and years. PPI's increase your risk of developing celiac disease in the future. that is over 4 years old that studied this topic of PPIs use and subsequent Celiac disease diagnosis. https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/do-proton-pump-inhibitors-increase-risk-of-celiac-disease-r2860/ they (the researchers) concluded  quoting "The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship." and why this is novel research we didn't know why this was so too recently. see this article as reported by Jefferson Adams on celiacdotcom.  It is good research. https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/could-drinking-baking-soda-fight-celiac-and-other-autoimmune-diseases-r4479/ I am also including the medical news today article link on this topic because I think it summarizes these findings well. https://www.medicalnewstoday.com/articles/321624.php the articles about about what controls (switches on) inflammation (autoimmune reactions) in the body. we have microvilli (not villi) that line our organs (especially  the spleen) that alarm our body when proteins are in the body and not in the GI tract. the spleen is critical is here because it acts like a general of sorts directing our immune system and when gluten or other proteins tricks it --- it attacks our body (villi) by mistake. And this new research explains why this happens. quoting from the the summary on celiacdotcom ( again I think the MNT article) goes into more details. " A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed." to continue quoting "The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response." Which explains perfectly how PPI's could cause someone to develop Celiac disease because it lowers our stomach acid.  And this study points out how raising our pH (lowering the pH) cause the spleen to settle down and stop attacking the bodies own organs (villi) in the case of Celiacs'. And it 's not just the Villi the body attacks they note it happens in other organs too when the "general" the spleen gets confused the whole body suffers inflammation. quoting again from the article Jefferson Adams "That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists. In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood." so getting off the PPI by taking BetaineHCL or if you can believe this research baking soda to raise your stomach acid to natural healthy levels of a pH of 3.0 or less should help your indigestion and help control you GI inflammation from too low a stomach acid. you can have this tested by doing an Esophageal pH Test or just take betaineHCL and go low CARB and try the Baking Soda in the meantime to see if it helps your indigestion (if it is going to be a while before you can see the doctor again.) https://www.healthline.com/health/esophageal-ph-monitoring If it is truly low stomach acid (from taking PPI's) and too many CARBS in your diet then taken BetaineHCL will improve your digestion.  Be sure to always take BetaineHCL wtih food and plenty of water.  Water activates the stomach acid and the food dilutes the Stomach acid to ensure you don't get too much. If you get a "warm sensation" in your abdomen it is working. ******this is not medical advice but I hope this is helpful. I had a similar problem with my low stomach acid being misdiagnosed. Sorry the explanation is so long but you got a lot going on inside.. . and it takes some time to try and explain it. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • The news bot in on crack again. VERY messed up....celiac site telling us to use barley for weight loss.....YEP will work as we will be married to the porcelain god for a night or two.
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