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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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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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