Continuing / New Symptoms

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Hi All -

So I am a self-diagnosed celiac. I didn't understand about the tests for celiac until after I had gone off gluten and as I'm sure many have said before me, there was no way I was about to start eating it again for confirmation of the actual disease. Whether I had celiac itself or not, I knew that I felt horrible when eating gluten and that was all I needed to know.

I've been off of gluten for nearly a year now and I've seen tremendous improvement in so many areas regarding my health. I feel a hundred times better every day than I have for years. However, I am still struggling with some continued and new symptoms, mainly physical pain, nausea, and bloating. These are not nearly as debilitating as they used to be, but they are a serious issue for me. The pain is mainly in my back and very, very occasionally in my chest as a broad, radiating pain. The nausea generally occurs in the morning and the bloating is after some meals, generally ones involving some type of rice or grain.

The biggest problem is the pain in my back and sometimes chest. It doesn't really feel like a muscular soreness, if you know what I mean. At first I thought it was clearly related to going hungry for a long time (like at work, where I have an physically active and fast-paced job) but now I'm not so sure. I have even been wondering if it was stress related, but I keep feeling like it must be in some way connected with my food and digestive system. It really, really hurts. It's not just a brief, nagging pain. It's something that makes me unable to continue with my work at times. Has anyone else experienced anything like this?

I'm also wondering if anyone has tried the Specific Carbohydrate Diet. Because of these lingering and bothersome symptoms, I've been thinking about trying the grain/sugar/processed junk-free SCD in the hopes that it will help me resolve whatever my body is still struggling to process. Thoughts?

I've been stalking this forum ever since I started gluten-free living and it's been a great help so here's to hoping someone might have some input for my situation!

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I had to go SCD (modified for my own needs) at first. I think I could make mortar and brick out of almonds, and cover it in marzipan adobe by now :D .

Keeping a food diary helps. In the past 3 years I had gotten much more adventuresome, and as a result, I was eating things that do not work for me. Tracking down the culprit ingredients was very challenging. Also, packers and manufacturers of food and ingredients constantly change how they do things in terms of gluten. There are many, many packaged foods I have had to give up because my body said they were cross contaminated, even if the food manufacturer said they were not. Also, some companies either move their facilities to ones co-processing gluten, or change suppliers, and they went from "safe" gluten free to "eat at own risk" status. One of the biggest bummers right now is where I used to get inexpensive almonds now has warnings on the bags about being processed in a wheat environment, when they didn't have that particular allergen listed before, so I have been stuck getting them somewhere else for a lot more money. I tried the almonds in the new packaging at the original store and it's a good warning. :ph34r: I may try to talk them into using a different packer and become safe again, since I have sent a lot of people there, plus I end up spending beaucoup bucks $$$ there, but I'm not optimistic. :(

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HI Atroposian,

Welcome to the forum! The pain you describe could be an ulcer or something else. I suggest you see a doctor about it. They do have tests now for the H. Pylori bacteria, which causes most ulcers. It's worth getting tested so you know if that is the cause.

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yup, might well be an ulcer....need to get it checked out.

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Depends on where the pain is. I had lower back and hip pain I at first thought was a direct result of my job working in a garden center. Then I found out my brother has ankylosing spondylitis, and lo and behold so do I. That is a WORST case scenario, and It's doubtful that's your specific issue. It could be the early stages of bursitis or sciatica, generalized inflammation of the joint. I generally eat primal, and it has helped some. It's definitely toned my migraines down to manageable levels. What's clear is that there's something else going on and you should get it checked out.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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