Celiac Disease (refractory type)

Posted by Reny @reny, Jul 13, 2019

I do not see any discussion about this disease and I suffer not only with this but with IBS that goes from D to C quite regularly. I have a strong gluten free diet, but suffer daily with symptoms that range from simple headache to all over exhaustion and muscle fatigue. I need a support group, either online or in the Orlando area. I really do. I need a positive support group. I also have hypothyroid, anemia, fibromyalgia, and chronic migraine. No, I am not a hypochondriac. Most of these are military service connected. I served 18 years from 1983 to 2001 and was deployed several times. Persian Gulf one veteran. Of course Celiac is genetic and I was diagnosed with that in 2008; however, the rest is SC and I am not able to work right now. I am getting a higher lever degree so I can work again (doctorate). I do miss working; however, I never know when my symptoms will keep me near a bathroom or in bed, so I need a job that is flexible and I can make my own hours (thus the doctorate).

Please let me know if anyone wants to chat.
Reny

@lighthouseceliac

This is so hard. So many of us have been just where you are. When the villi is so damaged it takes years to get any significant healing. The nice thing is…healing is possible.
How is your thyroid function? Hashimotos is common along with Celiac Sprue. I would think about that or other autoimmune diseases that might be in play.
This disease like any other really, is such a mental game too. Not like mental illness and not depression, but simply mental exhaustion. Go with the exhaustion, don’t fight it, that in and of itself is exhausting. But…also do what you can…when you can. Like a short walk inside the house…or stand for a bit…or sit and move your arms and legs.
Look into the AIP diet. The foods are so healing and lessen inflammation in your body. Every bite needs to be nourishing. Nothing processed for now is best. You will be amazed at how a few changes and learning about what your body needs does to speed healing.
Smile often, for mental energy. Read everything you can about Celiac and food choices. Get your body working with simple moves. Ask for help from everyone who can and will. Get good passionate medical help, demand tests and answers. You are not depressed, you are sick and need help.
You can make it past this stage, keep a diary to see your progress.
Every food might seem to bug you, keep eating right and it will get better.
Many of us can’t do oats, no one mentions this, grains of any kind are hard to digest when you are in this storm.
Keep fighting… never give in…live and smile and laugh. Surround yourself with loving caring people.
Someday soon you will be better❤️

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I understand how the fatigue is overwhelming- I have had other autoimmune inflammation of my intestines. The fatigue is secondary to the inflammation. I agree with lighthouseceliac that you should have your thyroid checked- it is very common to have more than one autoimmune disease. My daughter has both as well as multiple food allergies, all appearing recently.
Hang in there!

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@quiteachiver75

HELLO I AM WAITING FOR WHAT THE SPECIALIST SUSPECT IS CELIAC DISEASE. I AM WAITING FOR IT TO BE CONFIRMED

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How do they confirm it is Celiac I have a strong feeling I am because whenever I do eat certain foods I feel worse and pain [muscle] pain is worse

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@barb2025

How do they confirm it is Celiac I have a strong feeling I am because whenever I do eat certain foods I feel worse and pain [muscle] pain is worse

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@barb2025 – Mayo Clinic has some information on the diagnosis and treatment for Celiac disease here that explains how it's diagnosed.
https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

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thank you I just read the link, so when I had my colonoscopy I they did a biopsy for another reason so they would have found the celiac disease then you think?

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@barb2025

thank you I just read the link, so when I had my colonoscopy I they did a biopsy for another reason so they would have found the celiac disease then you think?

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@barb2025 — I'm not sure I can answer that but I'm pretty sure if you asked your doctor they would give you the specifics.

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Celiac Sprue affects the small bowel. Biopsies for that are done in the first part of the small intestine called the duodenum. Of course get clarity on this. I would think they were looking for different types of colitis in the colon.

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THANK YOU Lighthouseceliac

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@johnbishop

@barb2025 — I'm not sure I can answer that but I'm pretty sure if you asked your doctor they would give you the specifics.

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Thanks John

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My doctors thought I had the refractory type at first. Turns out I have the atypical form of Celiac Disease with its extra-intestinal manifestations which include, among other things, neuropathy.
I continued to have neurological problems despite the GF diet until my PCP thought to take me off the GF pizzas I was eating. It turns out that about 5% of those are contaminated – because they are processed in facilities that also produce regular pizzas. Anyway, my neuropathy has now vanished.
I read that patients with neurological complications are even more sensitive – such that even the foods marked GF can still contain too much gluten. I read that foods marked GF can contain up to 20 ppm. This can add up and trigger symptoms. I now eat mostly food that I know can not contain gluten. It is hard for example, to gluten me with a banana, watermelon, cantelope, etc. I also don't let anyone prepare my food for me. I almost never eat out. It has made all the difference in the world, so it has been worth it in my case.
Good luck to you.

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@lighthouseceliac

Oh forgot!! 15% of us cannot do oats of any kind. They are a rotation crop with wheat fields. Even safe ones make me extremely sick.

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Hello, I am a possible Celiac. I went gluten free f5 yrs ago for another problem. Felt so much better that I decided to get tested for celiac, not realizing that one must be on gluten for an accurate test. I did test positive though in 2 out of 3 areas. I too cannot do oats until last year when my gluten free magazine recommended Purity Protocol type of oats. They are grown in fields reserved for oats only and harvested/processed with equipment reserved for oats only, and they are organic (no pesticides). I have never found Purity Protocol oats in stores, so I order online. I can now enjoy oats again. Most oats say they are gluten free (they are naturally gluten free) but they still make me sick. They must be Purity Protocol.

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