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Stuck. Again.

Gfresh404

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Gfresh404 Enthusiast
Gfresh404
Posted

I recently read: A small portion of patients with celiac disease continue to present symptoms of gastrointestinal distress even after beginning the diet, as a result of an ongoing mild degree of inflammation. from Open Original Shared Link published by the University of Chicago.

Unfortunately I think I am in that small portion. So what the f*** do I do? I feel like I have tried everything at this point:

Vitamin Supplements (Multi, D, B-Complex, B12 Sublingual)

Mineral Supplements (Iron, Copper, Calcium, Magnesium)

Probiotics (Bunch of different kinds/strains)

Glutamine

N-Acetylglucosamine

Omega 3s (Fish Oil, Flaxseed Oil)

Digestive Enzymes (Bunch of different kinds)

Bunch of different herbs

They all seem to help but not they're not fixing (what seems like) the underlying problem: inflammation.

I have already had bloodwork done numerous times, everything has come normal each time. I have had tests done for thyroid issues, Crohn's, and Celiac - all negative.

I have been gluten-free for about 3 years and I am getting better, but at an absurdly slow pace. I have removed dairy from my diet months at a time and no difference.

I'm still tired a lot of the time and get very bad brain fog often. I also don't seem to be fully absorbing fats so maintaining my weight has been a struggle and an annoyance.

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mushroom Proficient
mushroom
Posted

Is your CRP and sed rate normal? These are pretty good measures of general inflammation. My CRP used to be through the roof, but is down to > 5 now.

Gfresh404 Enthusiast
Gfresh404
Posted
  • Author

Is your CRP and sed rate normal? These are pretty good measures of general inflammation. My CRP used to be through the roof, but is down to > 5 now.

Do you know if those would show up on normal bloodwork?

tom Contributor
tom
Posted

Have you tried soy-free?

Or if there's fluctuation in symptoms a food/symptom diary can help correlate things that aren't so obvious.

Gfresh404 Enthusiast
Gfresh404
Posted
  • Author

Have you tried soy-free?

Or if there's fluctuation in symptoms a food/symptom diary can help correlate things that aren't so obvious.

I guess that's really my last option, another elimination diet. It's just going to be extremely difficult to do while at school. I might have to wait till summer

mushroom Proficient
mushroom
Posted

Do you know if those would show up on normal bloodwork?

No, the CRP and sed rate have to be specifically checked, they are not part of any total panel. For a long while I did not know if my inflammation came from my arthritis or my gut - turned out, once I started taking the Humira, that it was coming from my arthritis :unsure: because it went down quite quickly.

pricklypear1971 Community Regular
pricklypear1971
Posted

No, the CRP and sed rate have to be specifically checked, they are not part of any total panel. For a long while I did not know if my inflammation came from my arthritis or my gut - turned out, once I started taking the Humira, that it was coming from my arthritis :unsure: because it went down quite quickly.

I had an alarmingly high crp a few months ago - first time it was tested. My Hashis antibodies were up and my tsh was off the chart. Very weird. I've been on thyroid meds for years and I've never been that high. It did correspond with me feeling like crap, though. Wish I knew what caused it.

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UKGail Rookie
UKGail
Posted

When I was being tested my CRP was normal, but my ESR was very high. I felt really ill. After I went gluten free it started coming down. It took 2-3 months to go back to a range which, while not "normal" was normal enough for the Doc to stop worrying.

Gfresh404 - have you considered trying the SCD or GAPS diet? I wonder if either of these approaches might help you.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I recently read: A small portion of patients with celiac disease continue to present symptoms of gastrointestinal distress even after beginning the diet, as a result of an ongoing mild degree of inflammation. from Open Original Shared Link published by the University of Chicago.

Unfortunately I think I am in that small portion. So what the f*** do I do? I feel like I have tried everything at this point:

Vitamin Supplements (Multi, D, B-Complex, B12 Sublingual)

Mineral Supplements (Iron, Copper, Calcium, Magnesium)

Probiotics (Bunch of different kinds/strains)

Glutamine

N-Acetylglucosamine

Omega 3s (Fish Oil, Flaxseed Oil)

Digestive Enzymes (Bunch of different kinds)

Bunch of different herbs

They all seem to help but not they're not fixing (what seems like) the underlying problem: inflammation.

I have already had bloodwork done numerous times, everything has come normal each time. I have had tests done for thyroid issues, Crohn's, and Celiac - all negative.

I have been gluten-free for about 3 years and I am getting better, but at an absurdly slow pace. I have removed dairy from my diet months at a time and no difference.

I'm still tired a lot of the time and get very bad brain fog often. I also don't seem to be fully absorbing fats so maintaining my weight has been a struggle and an annoyance.

I could have written your post, except I was DXed with Celiac 9mos ago, and went gluten-free at that time. My reflux and bloating went away, but other symptoms continued, including weight loss/weakness.

A food log showed me that soy was really bad for me, then I cut out dairy, peanuts, MSG, and now corn. It seems like I keep cutting things out, and I'm super diligent about cc, but my damage doesn't seem to be healing?

I've had 2 additional scopes in these past 9 mos. My blood test was negative for celiac, but I was given the Dx anyway, due to the severe villi damage. Then another GI said he didn't think it was Celiac. :blink:

Went to the Mayo Clinic in Florida, they did some testing and didn't have any answers, aside from finding a very mild parasite(which they treated). They referred me to Mayo in Minnesota. I was put on a mild steroid that acts only in the intestine. It's usually used for Crohn's.

I've been taking a lot of supplements too. I space them throughout the day so I'm not stressing my digestion by taking them all at once. I'm not taking a multi-vitamin because I couldn't find soy free ones.

I recently started getting angina, and my off-balance issue/brain fog has been lingering. After doing a lot of reading it seems I may be lacking vitamin E? I finally found a safe brand and have ordered it.

I wonder if you have been tested for SIBO, parasites, yeast overgrowth? From my reading those are things that should be looked at, along with additional food intolerances?

The steroid I went on (Entocort) seems to be helping me some? It's purpose is to stop inflamation. This past week is my first since DX that I haven't had a weight loss. That might be something for you to consider?

Also, the SCD diet seems to help a lot of people? I started on that, but had to add back in brown rice, and a few other things because of my weight loss issues. I simply couldn't consume enough calories to stay stable in my weight. Adding fats wasn't an option for me because I also have a poorly functioning gallbladder, which I'm hoping will heal, rather than having it taken out.

I read the article you posted about not healing. It's a scary thought! The Dr.s I've seen so far seem to think going off gluten should have healed me..or at least stopped any further damage? This doesn't seem to be the case with me? I'll be going to the Mayo in MN April 30th, for additional tests. I may have a Pancreatic enzyme deficiency? I don't know what else they'll test for? If I find out anything that could help DX your problem better I'll be sure to post about it.

Best wishes to you. It's really frustrating isn't it?

Gfresh404 Enthusiast
Gfresh404
Posted
  • Author

No, the CRP and sed rate have to be specifically checked, they are not part of any total panel. For a long while I did not know if my inflammation came from my arthritis or my gut - turned out, once I started taking the Humira, that it was coming from my arthritis :unsure: because it went down quite quickly.

I'm pretty sure I had those checked when they initially did all my bloodwork. But how would seeing those numbers help me one way or another? Don't they just register inflammation through out the body? Inflammation I'm pretty sure I am already experiencing.

When I was being tested my CRP was normal, but my ESR was very high. I felt really ill. After I went gluten free it started coming down. It took 2-3 months to go back to a range which, while not "normal" was normal enough for the Doc to stop worrying.

Gfresh404 - have you considered trying the SCD or GAPS diet? I wonder if either of these approaches might help you.

I really don't think I'd be able to follow something like, as of late I have been mixing in more fruit and veggies and less grains and it actually doesn't seem to be helping that much. I also have poor digestion of fats and I believe almond flour is a staple in the SCD

UKGail Rookie
UKGail
Posted

I really don't think I'd be able to follow something like, as of late I have been mixing in more fruit and veggies and less grains and it actually doesn't seem to be helping that much. I also have poor digestion of fats and I believe almond flour is a staple in the SCD

tom Contributor
tom
Posted

Try soy-free for 2 wks. One week wasn't enough for me. Then it made a HUGE difference.

I don't think any's hidden anymore as its a Top8 Allergen. So it's not that hard.

Whattayagot to lose?

Thread started w/ saying you feel like you've tried everything, so it's time for 2 wks soy-free.

Good luck!

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