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asickdaddy

Struggling. My Stomach Is Hurting So Bad. I Keep Getting Prescribed Opiates

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I have had some ups and downs.

I have done some gluten challenging.

My problem is I don't get instant reactions, it seems like for me, I need a build up of gluten.

Then I get the same pattern of sharp stabbing pains all throughout my upper body.

I get swallowing problems, where it feels like food goes down very roughly and burns.

I feel pretty good off the gluten, but its not 100%. It seems my symptoms get better but periodically return for no known reason and I doubt CC.

I have been in the ER 4 times, and they test me for practically everything from heart to everything.

This upper stomach pain is just beyond exhausting.

I am currently taking vicodin. I don't want to develop an addiction, but this seems to be the treatment I am repeatedly given.

I get sent home with, your healthy, there is nothing wrong with you. Here is some pain pills.

I do not see the doctor till the end of the month but I think I need to just eat fruit and vegetables for the next year. I can't take the pain.

I am sick of challenging the gluten, and dairy. But I still don't know what will 100% resolve my problems. Bummed.

My endoscopy, they said was clean as a whistle but yet they did not take any biopsies. I guess everything looked normal except for celiac which apparently they did not check out. Bummed.

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Gluten reactions are often delayed reactions, that is not unusual. If your doctor did not do biopsies when he did the endo your doctor knows nothing about celiac. He needed to do at least 5 or 6 biopsies as the damage from celiac can often not be seen with the naked eye.

You say you doubt CC is an issue. Is your home gluten free? Are you eating only at restaurants that have gluten free menus or telling them the precautions that need to be taken? What are you typically eating? Whole unprocessed foods are the safest to go with. Also are you checking with the maker that the pain pills they are giving you are gluten free? The doctors and nurses are not going to know and you need to check the pills with the maker.

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I have had some ups and downs.

I have done some gluten challenging.

.

.

.

I feel pretty good off the gluten, but its not 100%. It seems my symptoms get better but periodically return for no known reason and I doubt CC.

How long have you been gluten free? How long since the last time you challenged gluten? Why are you challenging? Is it because you are not convinced that gluten is a problem? Is it because you find yourself in a social situation and "just can't say no?"

I see that you became a member in March. If that is when you started your gluten free journey and in that time you have occasionally been eating gluten, then I would say that your return of symptoms for no known reason is because you have not healed and challenging gluten every so often keeps you from healing.

It was close to 10 months before my daughter no longer had symptoms and that was eating as gluten free as possible (little to no restaraunts and a shared but aware household). When she would have a flare, there would be no obvious culprit. We just kept putting in the time and then it finally stopped.

My recommendation is to be truly gluten free. No more challenges. Give it a good six months without cheating . . . knowing that you may have some symptom flares. You may even want to keep a record of frequency and severity so you can judge if it is improving. At that point, if you don't think it is a least getting less severe/less frequent, you may want to look at additional intolerances...dairy, soy, nightshades . . .

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A number of my symptoms refused to resolve until several things happened:

  1. We made our home entirely gluten-free - including our pet food and cookware
  2. I went on a whole/raw foods diet only for about 8 months.
  3. Eliminated casein and all cow dairy products from my diet.
  4. I eliminated all grains and grain based products.
  5. Verified all our viatmins/supplements/meds as gluten-free or found gluten-free replacements.

Each one of these steps produced a marked improvement.

There is a huge amount of CC in grains and because of the way the labeling requirements are for grains if a product is a made with a non-gluten grain (e.g. sorghum or soy) there is often no testing done on the end product as there is a assumption that the sources are gluten-free. So if the original grain is CC (38% of soy samples were CC above 200 ppm) then end product is NOT gluten-free even if it is made with 'gluten-free' ingredients in a 'gluten-free' facility. We ship grains from our port here and I can see why the CC is so high. They use the same conveyors to load/unload all the grains. AGP here handles wheat, soy, corn, and a couple others (I don't recall what) and they load/unload/process the rail cars and ship holds with all the same gear. I am still 99% grain free and will remain so. What grains I do eat (rare) are usually rice (never white rice), quinoa, and occasionally some flours for breading which tested low on CC (brown rice, amaranth, quinoa are good choices).

The whole foods diet consisted of carefully selected fresh (uncooked) veggies and a very limited amount of fruits/berries, and coconut oil. The veggies we consumed in the form of a 'green drink', processed in a blender with fruit, coconut and fish oil, and coconut milk. The veggies were selected with a focus on vitamins/nutrients I knew I was low from lab testing (D, K, E) or suspected I was low in from presentation of symptoms (B12/6, Omega 9). I also tested low (Sodium, Magnesium) or showed symptoms (Selenium, Copper) for a number of mineral deficiency. Oils are required to absorb fat soluble vitamins (D,K,A,E) so low fat diets can be deadly to someone with malabsorption issues. Meat was consumed cooked only in coconut oil or bacon drippings, and I added liver (chicken and beef, organic grass-fed only) as it is arguably the single most nutrient and mineral dense food (usda.gov nutrition database) available to us. Also, being meat it does not depend on proper gut flora for digestion in the same way veggies and fruits do which can be critical if you suffer from intestinal dysbiosis (bacterial overgrowth or missing 'good' bacteria which are required for proper digestion and absorption of plant/carb based nutrition).

I resisted making our home gluten-free at first, but after several times of CC from using cutting boards, cookware, baking stones, and so on, we were forced to do it. This alone resolved a number of other lingering symptoms.

Vitamins/meds: This is one case where I might strongly press some people to pursue a diagnosis as it wound up being necessary for my insurance to cover a non-generic med. The generic was not gluten-free, the non-generic was. They didn't want to pay for the non-generic. Fortunately I'm no longer on any meds for anything (taking supplements for hypo-adrenia), but this is still a concern for our vitamin supplements. I'm on 8,000 IU/day of D3 still.

* Edited because I left out a bunch of stuff as usual that I didn't catch until AFTER hitting 'post' :)

Edited by Korwyn
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Scott just posted this article on the site in another thread.

What do you want to get from a formal diagnosis? There are good reasons for getting it and there are reasons not to get it. Each person needs to evaluate the value of it to themselves.

Low Adherence to Biopsy Guidelines Affects Celiac Disease Diagnosis in the United States

NEW YORK, July 8, 2011 /PRNewswire-USNewswire/ -- A new study has found that most patients undergoing biopsy of the small intestine do not have the recommended number of samples to diagnose celiac disease. The study, published in the July 2011 issue of Gastrointestinal Endoscopy, analyzed a national database of biopsy specimens maintained by Caris Life Sciences (Irving, TX). More than 100,000 patients had a biopsy of the small intestine, but only 35 percent of them had at least four samples taken, the number recommended by professional guidelines. ...More of the article on the URL link.

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What kind of lab work have you had done, blood / stool tests, radiology?

there's plenty of "basic"(and relatively cheap) tests you could do to check for things like chronic inflammation, bleeding, etc. which would cause doctors to pay attention. Additionally those aren't things that ERs would generally check for, when you go to the emergency room they are going to look for anything that is immediate and potentially life-threatening/disabling.

Also, the upper abdominal pain could potentially be your large intestine (the tranverse colon sits right next to the duodenum and stomach) and wouldn't show anything on an EGD. Unless you -know- where the pain is because of a previous condition (for example, I had acid reflux and ulcer symptoms long before anything else), you may want to expand your consideration to include the large intestine and the rest of the small bowels.

If you haven't looked for GI bleeds and chronic inflammation, you may want to try that. Celiac damage is associated with inflammation and usually some of those markers will be present. They are considerably cheaper than an EGD (what you got already) and most doctors/insurance don't need much evidence to authorize them.

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