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Continuing / New Symptoms


Atroposian

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Atroposian Newbie

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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Takala Enthusiast

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. :(

GFinDC Veteran

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.

frieze Community Regular

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

saintmaybe Collaborator

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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
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    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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