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2-Year Into The gluten-free Diet And Still Experiencing Relentless Symptoms

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So, as I'm writing this thread, I'm listening to my stomach churn and attempting to ignore the horrible stomach ache that I've had for the past few days. Unfortunately, even after being diagnosed with Celiac Disease nearly 2-years ago and gluten free (including supplements to the best of my knowledge) ever since, many of the pre-diagnosis symptoms remain...including near daily stomach aches, which are actually much worse since going on the gluten free diet. I also seem to now have occasional peripheral neuropathy and increased joint pain. On the plus side, I definitely have more energy and am so thankful to now live mostly anxiety-free...whereas before diagnosis, my anxiety was off the charts.

Anyhow, although I'm extremely indebted to the GI doc that diagnosed me, neither him, nor any of the GI docs I have seen over the past 2-years have offered-up anything other than follow a gluten free diet. Something's amiss though!! And my recent follow-up endoscopy confirmed my suspicion - el villi have not healed much since diagnosis (boo)! And they were DOA to begin with -- complete villious atrophy. And, in spite of all of this, I'm fine with the gluten free diet. In fact, I even find it quite liberating at times, in the sense that there is no longer a dialogue upstairs about food.

I just wish I felt well and it seems as though the cause of the continued symptoms could be anything -- pernicious anemia, candida, IBS, other auto-immune conditions, etc; curious if others have experienced the same or similar symptoms and what you have done to feel well again?

Thanks!

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So, as I'm writing this thread, I'm listening to my stomach churn and attempting to ignore the horrible stomach ache that I've had for the past few days. Unfortunately, even after being diagnosed with Celiac Disease nearly 2-years ago and gluten free (including supplements to the best of my knowledge) ever since, many of the pre-diagnosis symptoms remain...including near daily stomach aches, which are actually much worse since going on the gluten free diet. I also seem to now have occasional peripheral neuropathy and increased joint pain. On the plus side, I definitely have more energy and am so thankful to now live mostly anxiety-free...whereas before diagnosis, my anxiety was off the charts.

Anyhow, although I'm extremely indebted to the GI doc that diagnosed me, neither him, nor any of the GI docs I have seen over the past 2-years have offered-up anything other than follow a gluten free diet. Something's amiss though!! And my recent follow-up endoscopy confirmed my suspicion - el villi have not healed much since diagnosis (boo)! And they were DOA to begin with -- complete villious atrophy. I was also told at the time that I was a Marsh 3C/4 for what it's worth. And, in spite of all of this, I'm fine with the gluten free diet. In fact, I even find it quite liberating at times, in the sense that there is no longer a dialogue upstairs -- i want that slice of pizze, but i shouldn't have that slice of pizza....mmm...it smells soooo good. Ok, just one slice.

I just wished I felt well and it seems as though the anti-well could be anything -- pernicious anemia, candida, gastritis, other auto-immune conditions, IBS, etc; curious if others have experienced the same or similar symptoms and what you have done to feel well again?

Pre-emptive thanks!

Like you, I still had gut symptoms after 2 years abstinence from gluten (and dairy). So I did blood tests for delayed reaction food allergies and found 6 more allergens. Even abstaining from allergens didn't resolve all my symptoms. So I started getting stool tests for 'gut bugs'. I went through 4 years of one bug (bacteria, parasite or yeast) after another for a total of 8. Then I found a doc who determined why I kept getting those gut infections and frequent respiratory infections. She gave me the Heidelberg capsule test and found low stomach acid production. Blood tests showed low vitamin D, low thyroid function and low white blood cells. Adrenal function test showed low DHEA. All those things influence immunity. 6 years later I've resolved all those problems. I don't have chronic gut pain (and constipation). I don't get gut bugs or respiratory infections anymore. It was a long, winding journey, but well worth the effort to figure out and resolve the sources of my symptoms. Good luck!

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Thanks so much for the reply. I'm encouraged by the outcome, discouraged by the length of time. I really hope to be able to make some progress sooner. Frankly, I'm a bit disappointed that I've allowed myself to go on like this for as long as I have. I had a food allergy panel conducted shortly after diagnosis and inquired with my GI about some of the issues you mentioned. He was dismissive of the food allergy results, of which there were many, and encouraged me to simply stick to the gluten free diet, presuming that many of my issues, including the stomach aches would eventually disappear; not the case. Anyhow, do you have any suggestions where exactly to start and what you did to remedy the stomach pain? I'm fearful to consume much of anything these days.

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Hi,

Stomach pain could be caused by H.Pylori also. Might be something to ask the doc about.

You could also try an elimination diet, and a whole foods only diet.

Many of us have additional food intolerances, and they can cause plenty of symptoms. There is also the possibility of reacting to very low levels of gluten in gluten-free foods, or just reacting to all grains for that matter. That's where an elimination diet can be very helpful, to weasel out those possible additional dietary problems.

I had symptoms for 4.5 years after going gluten-free and did a series of elimination diets which revealed additional food issues for me. Getting those things out of my diet has made a big improvement so it is well worth while for me.

It may seem like there are no answers, but if you keep trying you will probably find them. I hope you feel better soon. :)

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Thanks for the feedback, Paul. Yes, at times, it does seem like there are no answers. Strictly following a gluten-free diet doesn't appear to be enough unfortunately. I'd just like to know what to do to stop the stomach stuff NOW. I did go to my primary care today. He's a truly exceptional Dr. -- and has been a great launch pad in the past for alternative treatments. I'm going to have a stool and urine analysis conducted to start and we'll see what if anything that reveals. Fortunately, I think my Dr. is willing to explore potential causes beyond Celiac, which has been wonderful. I'm also meeting with a new dietitian to see if she can help with an elimination diet.

thanks again.

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