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Going Insane.

healinginprogress

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healinginprogress Enthusiast
healinginprogress
Posted

My head hurts enough right now that it is borderline difficult to even find the right words. I have been gluten-free for almost a year and I still have daily symptoms..ranging from mild to severe. I know that nobody is ever 100%, but I don't even feel close. I had colorectal surgery nearly ten weeks ago. It was major surgery, so I know that plays a part. I'm still unable to work or exercise much. But I'm just in pain and discomfort on a daily basis.

Going gluten-free all but eliminated my nausea, vomiting and diarrhea. But the symptoms that remain include brain fog, migraines, tummy distension, gas, constipation, insomnia, depression, anxiety, muscle and joint pain, extreme fatigue.

I am very careful with what I eat. My entire house is gluten-free and I have done tons of research. There is no hidden gluten. But my TTG levels are still over 200. From what I have read, this means my antibodies are still really high. Which generally would mean gluten in the diet...but there is NOT!

I've removed dairy. I have recently tried removing soy and corn...I barely ate any, anyways.

When does this get better? The chronic pain and/or illness is seriously wearing on my psyche. I know I have Celiac Disease, but I don't know why I only seem to be minimally responding to the gluten-free diet. Or is it just taking a really long time? I can't seem to find clear answers other than the Celiac diagnosis. I don't want to cut out any more foods. I'm already feeling depressed about what I've eliminated so far.......which I would NOT feel depressed about if it actually seemed to make a difference! Yes, I am WAY SICKER on gluten, and I will NOT go back.....but my health and quality of life are still not normal...not even functional.

I don't know if I'm really making sense, or what I'm even asking. I'm 29. At this point I'd say I could count how many "good days" I have in a month on one hand. This can't be right!

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Marilyn R Community Regular
Marilyn R
Posted

Dear Healing,

I suspect you have other food allergies or intolerances. gluten-free Oats and quinoa in any way, shape or form smacked me around for awhile. I could only tolerate tapioca flour and some of the bean flours. Buckwheat never killed me, but I was careful with it.

I advocate skin prick testing at an allergist's, it identified som weierd things I would never have guessed.

Good luck, hope you start feeling better soon!

kareng Grand Master
kareng
Posted

Sorry you are feeing so bad.

But I think a few things are missing here. What does the GI say about the high levels? Why did he do surgery? Has he done a repeat endoscopy to check the damage? The reason for the surgery may be why you feel bad not the Celiac?

healinginprogress Enthusiast
healinginprogress
Posted
  • Author

The surgery was for a rectal prolapse and sigmoid resection...the damage to my insides was pretty severe by the time I was diagnosed, and needed some repairing. My colon was repaired and he removed part of my intestines. I had a very positive blood test last February and went gluten-free because there was a long wait for an endoscopy. I didn't get the endoscopy and colonoscopy until late September...I only did a brief gluten-challenge which made me extremely sick, but I still had a positive biopsy. The surgery was November 17th.

But pre-surgery and post-surgery alike, I have not gone more than a couple days feeling "good". I definitely felt worse before going gluten-free, but please try to understand.

As for my bloodwork...I don't have a GI. My family doctor didn't seem to know at all what it meant when my TTG was still over 200 in November, before my surgery. I just had a full workup done (at my request), because I wanted to see if there was anything missing...maybe a vitamin deficiency, etc. Everything looks normal to me, except the TTG, which, again, is over 200. I am meeting with my doctor on Wednesday to discuss my bloodwork, but I am uncertain he will have much more to say than last time.

I have been told that you don't "treat" bloodwork. But if my antibodies were that high and I DID NOT have symptoms still, then maybe I would let it go.

I don't know, maybe I just need to stop trying to figure out what's wrong. All I really want is to feel better. I want my symptoms to be managed. Or I want to know that this is as good as it gets so that I can just accept it and learn to live the best I can with chronic pain and discomfort.

pricklypear1971 Community Regular
pricklypear1971
Posted

I believe Ttg is a measure of intestinal damage? It sounds like you've got quite a bit of healing to do - going by your post, not the Ttg.

There's another thread here about an elevated Ttg in presence of other normal Celiac tests.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I don't know about the high test score? Maybe you are just slow to heal?

I CAN tell you that I had a surgery where I had most of my rectum and part of my colon removed due to cancer years ago. They said I should recover from the surgery in about 6 weeks. My incision was healed by then, but it actually took more like 6 MONTHS to get back to feeling back to normal. An intestinal surgery is a brutal thing to go through. Disturbing the intestine *can* make it sluggish too.

Be sure you've checked any vitamins/supplement for hidden gluten, and maybe keep a log of the foods you eat and note any symptoms, even if you don't think they're food related? You may have a second food intolerance, which is common. Many times a reaction to a food is delayed, making it a bit harder to figure out.

Best wishes to you in your healing and recovery!

Avalon451 Apprentice
Avalon451
Posted

I'm wondering if you have thyroid issues. Those could account for your feeling rotten.

The other alternative would be to go on a strict elimination diet for 3 months, give your body time to heal, and find out what exactly you react to, as you start to add things back in. Open Original Shared Link

I've also heard really good things about the paleo diet. Get rid of ALL grains. You can thrive on meat, veggies, nuts and fruit.

Why is it you don't have a GI doc? Can you ask for a referral from your regular doctor? With all these issues it seems like you should probably be seeing specialist, if you can find one that is knowlegable about celiac.

I sure hope you are feeling better soon!

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MitziG Enthusiast
MitziG
Posted

Healing is a process, sort of like putting a puzzle together. it is important to focus on how much of the puzzle you have solved! The rest of the pieces may take awhile. You may have to try them in alot of different spots before you find the one that fits. And then there will still be more pieces to fit in. Just keep trying, and keep coming here for the support that you need to get through this.

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