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What Do You Do For The Pain?


TTNOGluten

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TTNOGluten Explorer

I have recently seen a number of posts about many pain related issues with celiac. Seems like many folks including myself experience rib cage pain, and back pain, as well as abdominal pain. I don't know if this ever improves, but I sure hope so, as it is debilitating at times. It is truly hard to imagine that an intestinal process can cause all of this, but it certainly seems to be a recurring theme for a lot of us?

Was wondering what most folks do to get relief of the pain, most of the docs I have seen seem to be very unfamiliar with the pain portion of this disease, be it abdominal pain or more widespread muscular/bone pain??

Looking for some advice I guess. I have a very hard time working with this pain every day, I have to take breaks and lay down, and get a lot of brain fog feeling especially in the morning, like I am out of my head, I guess like an out of body experience, or drunk feeling kind of??


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Reba32 Rookie

I guess it would depend on which country you live in as to which off the shelf or over the counter pain relievers are available to you. For me though, an anti-inflammatory like ibuprofen or naproxin (advil or aleve) works, along with a heating pad on my gut and on my back.

In Canada there's also Robax Platinum, which has the anti-flammatory plus a muscle relaxant and that helps if you can get it.

As for the brain fog, unfortunately there's not much to do about that, you just have to wait it out. The effects can last anywhere from a week to a month.

TeknoLen Rookie

I used to take plain aspirin but stopped when I learned that aspirin could be partly responsible for weakening my gut ecosystem. Now my "painkiller" is an Epsom salts bath and sleep...

YoloGx Rookie

I am starting to use acupressure. There are a number of books online that look very helpful. I got a couple myself just recently. I am finding it is really helping both me and my boyfriend who also has severe gluten intolerance!! Exercise also helps, once I am over the worst of it. I also find that taking detox herbs really helps since usually the liver, kidneys and lymphatic system are stressed as well as the intestines--which then usually affects my back, neck and joints. Thus dandelion root, marshmallow root really help take away the inflammation and thus the pain. If I am really under it I might also take either Oregon grape root for a while or Barberry root (I usually just take these last two herbs for at most 5 days--then go off them for say 3 or 4 days). Nettle tea can help too. Parsley, celery and lettuce blended in the blender into smoothies also is a great pick me up that helps with the detoxing process.

IrishHeart Veteran

I see you are still battling the brain fog, huh? Sorry hon.

You are SURE there's no gluten getting in???

You started the probiotics, right? They will start to calm the inflammation down.

Okay, the pain is from inflammation and be careful using too many OTC anti-inflammatories as they are gut-irritants.

You can try warm epsom baths as TeknoLen suggests.

White willow bark is a natural anti-inflammatory and less rough on the gut.

St. Joseph's baby aspirin.

Use warm compresses --or a heating pad or hot water bottle--or the gut and ribs ---but I use ICE on my spine/back pain. Knocks down the inflammation.

The rib cage and abdomen pain diminished for me by about month 5. The spine pain lingers, but I have other issues going on from the celiac.

Plus, you are getting over the gall bladder surgery.

Hope you get relief soon.

GFinDC Veteran

H. Pylori also pain on left side under rib cage

I use Altoids peppermints some. When I have gas in my stomach it makes the pain worse. So I take the Altoids to help get it out. I used to get very foggy when gassy with gi inflammation issues going on. It may help quite a bit to get the gas out. I used to do stretches and bends to get it out.

Pepto Bismol may help also as it can coat and soothe the gut. Be aware Pepto Bismol will turn your stool black due to the pink coloring in it. Black stool is a sign of internal bleeding usually, but pepto causes it also.

I am pretty sure I have an H.Pylori infection going on so I plan to get some mastic gum for that. See linked thread for more info.

I take aspirin also, and marshmallow root, and l.gutamine, DPP-4 and okra.

Ginger tea may help some. It tastes good anyway.

A little rum seems to help at night too. :D And some melatonin for sleep.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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