Celiac Disease (refractory type)

Posted by Reny @reny, Sat, Jul 13 4:08pm

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

Hello Reny @reny, Welcome to Connect. You mentioned that you also have IBS and Celiac Disease. There is another discussion that was recently started where you can meet @jjren and @sue225 who have also discussed Celiac disease and IBS. Which symptom bothers you the most?

> Groups > Digestive Health > Celiac Disease/IBS and Tachycardia
https://connect.mayoclinic.org/discussion/celiac-diseaseibs/

You may also be interested in the following discussions:

> Groups > Diabetes/Endocrine System > Thyroid and Body Pain
https://connect.mayoclinic.org/discussion/thyroid-and-body-pain/

> Groups > MAC & Bronchiectasis > fatigue and muscle weakness
https://connect.mayoclinic.org/discussion/fatigue-and-muscle-weakeness/

> Video Q&A about IBS and How We Can Help
https://connect.mayoclinic.org/webinar/on-facebook-live-ibs-and-how-we-can-help/

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@johnbishop

Hello Reny @reny, Welcome to Connect. You mentioned that you also have IBS and Celiac Disease. There is another discussion that was recently started where you can meet @jjren and @sue225 who have also discussed Celiac disease and IBS. Which symptom bothers you the most?

> Groups > Digestive Health > Celiac Disease/IBS and Tachycardia
https://connect.mayoclinic.org/discussion/celiac-diseaseibs/

You may also be interested in the following discussions:

> Groups > Diabetes/Endocrine System > Thyroid and Body Pain
https://connect.mayoclinic.org/discussion/thyroid-and-body-pain/

> Groups > MAC & Bronchiectasis > fatigue and muscle weakness
https://connect.mayoclinic.org/discussion/fatigue-and-muscle-weakeness/

> Video Q&A about IBS and How We Can Help
https://connect.mayoclinic.org/webinar/on-facebook-live-ibs-and-how-we-can-help/

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I would have to say right now, the symptom that bothers me the most is the sheer exhaustion I feel after 'dumping' after a few days of constipation. The abdominal pain pain I feel every day. How can I have a relationship like this? I have constant gas and bloating no matter what I eat. I look like I am pregnant all the time. It is horrible.

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@reny

I would have to say right now, the symptom that bothers me the most is the sheer exhaustion I feel after 'dumping' after a few days of constipation. The abdominal pain pain I feel every day. How can I have a relationship like this? I have constant gas and bloating no matter what I eat. I look like I am pregnant all the time. It is horrible.

Jump to this post

@reny I'm sure it must be awful to have to deal with those symptoms. I struggle with constipation once in awhile but not constant gas and bloating. There is a discussion on where you might get some suggestions for what might help here:

> Groups > Digestive Health > Stomach bloating/ digestive issues
https://connect.mayoclinic.org/discussion/stomach-bloating-digestive-issues/

I have no medical training or background but from reading about celiac disease the bloating, constipation and fatigue can all be symptoms of celiac. Has your doctor offered any suggestions to help or have you discussed the symptoms with your doctor?

BeyondCeliac.org – Symptoms List
https://www.beyondceliac.org/celiac-disease/symptoms/

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@reny

I would have to say right now, the symptom that bothers me the most is the sheer exhaustion I feel after 'dumping' after a few days of constipation. The abdominal pain pain I feel every day. How can I have a relationship like this? I have constant gas and bloating no matter what I eat. I look like I am pregnant all the time. It is horrible.

Jump to this post

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

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@reny

I would have to say right now, the symptom that bothers me the most is the sheer exhaustion I feel after 'dumping' after a few days of constipation. The abdominal pain pain I feel every day. How can I have a relationship like this? I have constant gas and bloating no matter what I eat. I look like I am pregnant all the time. It is horrible.

Jump to this post

Good morning! I have been where you are and know the frustration. There is hope and help and healing.
Fist and foremost get on a probiotic, a good strong gluten free one. I get mine from Kirkman, ordered online. I used to use VSL #3, this is available in the fridge at a pharmacy, Costco has the best price. Just ask at the pharmacy desk for it. Take it morning and night.
Start on the AIP way of eating. It is the best for getting your inflammation down. Do it for as long as you can, my goal was a week, then a month. I felt so good that I didn’t reintroduce foods for several months.
Exercise is extremely important. Start with yoga simple posses, some weights and as much walking (indoor or outside) as you can.
The GF products are usually unsafe because of cross contamination, we are dealing with microscopic amounts that make our immune system over react and destroy the villi. It is a constant vigilance. Stay to the edges of the grocery store. No cheerios, they are not safe, look for products from a dedicated production line only.
Verywell.com has great advice, also glutendude. Edison Grainery (edisongrainery.com) is the only business that I will get pastas. Nuts.com has GF products. “Against the Grain” products are safe too, try the AIP diet first though before doing any processed foods.
Write me anytime, you will recover and heal, it takes all your will power, you know battles well, you will be great soon!!
Most of all keep your mind still, stress is the hardest part. Find or rediscover a hobby. Make a daily diary to see your progress. Write down what you are grateful for each day.
Leader brand immodium is safe, alka selzer, Benadryl…all are my lifesavers. You can get your life back and be better than ever!!!

REPLY
@lighthouseceliac

Good morning! I have been where you are and know the frustration. There is hope and help and healing.
Fist and foremost get on a probiotic, a good strong gluten free one. I get mine from Kirkman, ordered online. I used to use VSL #3, this is available in the fridge at a pharmacy, Costco has the best price. Just ask at the pharmacy desk for it. Take it morning and night.
Start on the AIP way of eating. It is the best for getting your inflammation down. Do it for as long as you can, my goal was a week, then a month. I felt so good that I didn’t reintroduce foods for several months.
Exercise is extremely important. Start with yoga simple posses, some weights and as much walking (indoor or outside) as you can.
The GF products are usually unsafe because of cross contamination, we are dealing with microscopic amounts that make our immune system over react and destroy the villi. It is a constant vigilance. Stay to the edges of the grocery store. No cheerios, they are not safe, look for products from a dedicated production line only.
Verywell.com has great advice, also glutendude. Edison Grainery (edisongrainery.com) is the only business that I will get pastas. Nuts.com has GF products. “Against the Grain” products are safe too, try the AIP diet first though before doing any processed foods.
Write me anytime, you will recover and heal, it takes all your will power, you know battles well, you will be great soon!!
Most of all keep your mind still, stress is the hardest part. Find or rediscover a hobby. Make a daily diary to see your progress. Write down what you are grateful for each day.
Leader brand immodium is safe, alka selzer, Benadryl…all are my lifesavers. You can get your life back and be better than ever!!!

Jump to this post

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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@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.

Jump to this post

Oats can also have the highest levels of the pesticide glyphosate on them. I wonder if that affects people too. When they found this out last summer that Quaker Oats and their instant oatmeal was loaded with glyphosates, Quaker changed their packaging to make it look healthier. They didn’t go so far as to change to a non-gmo grain.

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Hi @reny,

Kudos to you for pursuing a doctorate! Managing a chronic condition is a journey, but you don’t have to do it alone. You’ve come to the right place to talk with others who have similar experiences with health, and to get support from people who understand what you are going through.

I just came across your message, and thought I’d mention the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ – a great resource for information, current therapies, clinical trials, etc. related to celiac disease. You can also browse through newsfeed posts from Mayo Clinic experts. For instance…
– What to do When A Gluten Free Diet Doesn't Work https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/what-to-do-when-a-gluten-free-diet-doesnt-work-1/
– Tips to Avoid Cross-Contamination in Gluten-Free Foods https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/tips-to-avoid-cross-contamination-in-gluten-free-foods/

Here’s a Mayo Clinic article that might also interest you:
– Classification and Management of Refractory Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/

@reny, may I ask if you are taking any medications to manage the celiac disease symptoms?

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@iiqquu

Hi , I have been diagnosed with celiac disease since three years. Though I am off gluten still I have so much fatigue that I cannot stand even for 1 min.I have been tested throughly and my WBC is low always and keeps on fluctuating between 2000-5000.I have extreme fatigue that I feel like dying .What should I do

Jump to this post

Hello @iiqquu, Welcome to Connect. There is another discussion where you can meet other members who share your symptoms. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion:

> Groups > Digestive Health > Celiac Disease (refractory type)
https://connect.mayoclinic.org/discussion/celiac-disease-under-immune-disorders-refractory-type/

Here’s a Mayo Clinic article that might also interest you:
– Classification and Management of Refractory Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/

@iiqquu, may I ask if you are taking any medications to manage the celiac disease symptoms?

REPLY

Hi , I have been diagnosed with celiac disease since three years. Though I am off gluten still I have so much fatigue that I cannot stand even for 1 min.I have been tested throughly and my WBC is low always and keeps on fluctuating between 2000-5000.I have extreme fatigue that I feel like dying .What should I do

REPLY

Hi @iiqquu I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on Connect on Celiac Disease so that you can connect with others with similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so frustrating to have such extreme fatigue. I'd like to tag @lighthouseceliac and @ldramjet as they have experience with celiac disease and may be able to offer you support.

To build off of John's question have you been given any instructions on how to manage this fatigue? Given ideas of foods to eat or medications you can take to increase your energy and WBC?

REPLY
@iiqquu

Hi , I have been diagnosed with celiac disease since three years. Though I am off gluten still I have so much fatigue that I cannot stand even for 1 min.I have been tested throughly and my WBC is low always and keeps on fluctuating between 2000-5000.I have extreme fatigue that I feel like dying .What should I do

Jump to this post

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❤️

REPLY
@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❤️

Jump to this post

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

Jump to this post

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

Jump to this post

@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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