Celiac Disease (refractory type) Page 2

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

Ingegerd Enscoe, Volunteer Mentor | @astaingegerdm | Sep 15, 2019

In reply to @lighthouseceliac "This is so hard. So many of us have been just where you are. When the..." + (show)

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!

3 Likes

barb2025 | @barb2025 | Sep 17, 2019

In reply to @quiteachiver75 "HELLO I AM WAITING FOR WHAT THE SPECIALIST SUSPECT IS CELIAC DISEASE. I AM WAITING FOR..." + (show)

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

John, Volunteer Mentor | @johnbishop | Sep 17, 2019

In reply to @barb2025 "How do they confirm it is Celiac I have a strong feeling I am because whenever..." + (show)

@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

barb2025 | @barb2025 | Sep 17, 2019

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?

John, Volunteer Mentor | @johnbishop | Sep 17, 2019

In reply to @barb2025 "thank you I just read the link, so when I had my colonoscopy I they did..." + (show)

@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.

lighthouseceliac | @lighthouseceliac | Sep 17, 2019

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.

1 Like

barb2025 | @barb2025 | Sep 17, 2019

THANK YOU Lighthouseceliac

barb2025 | @barb2025 | Sep 17, 2019

In reply to @johnbishop "@barb2025 -- I'm not sure I can answer that but I'm pretty sure if you asked..." + (show)

Thanks John

1 Like

lisa53 | @lisa53 | Oct 16, 2019

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.

2 Likes

airey2 | @airey2 | Oct 16, 2019

In reply to @lighthouseceliac "Oh forgot!! 15% of us cannot do oats of any kind. They are a rotation crop..." + (show)

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.