Refractory Celiac?

[J Morgan]

Hi friends,

This is my first post here! I was diagnosed with celiac via blood work and endoscopy in 2014 and have been on a strict gluten-free diet since then. So strict that when I was accidentally glutened once last year I was so sick I thought I was going to die. I got very familiar with bathroom floor that day with that gluten getting out of my body every way humanly (and at times it felt like inhumanly) possible. 
 

Felt pretty great for years since going gluten-free. In the past 18 months I had COVID, then lots of bronchitis, then pneumonia, then pericarditis. I am still on meds for pericarditis (steroids and something called colchicine). I also developed a weird fatty lump on my ribs. 
 

About 2 weeks ago I started to have INTENSELY bad stomach problems. Explosive diarrhea, super impressive gas and burping and bloating and stomach pain. I am spending about 25% of my work day in the bathroom now. 
 

I also noticed an increase in muscle twitches and cramps on my left side, now my left leg is going numb at random times. In the past two weeks I have fallen up the stairs, in the yard and in my living room. I have lots of beautiful bruises as a result. 
 

For the past two weeks I have only had Kate Farms’s nutritional shakes, blueberries, bananas, Chex cereal, rice and fish. Today I only ate the Kate Farms shake b/c I just can’t imagine eating anything. 
 

I had an endoscopy a week ago and it showed increased lymphocyit….whatever that word is and blunted villi. My endoscopy last year did not show blunted villi. 
 

My TTG test is normal. It was 145 when I was first diagnosed. My blood work shows low protein and low white blood cells. 
 

I don’t drink or smoke. My cholesterol is great. 
 

I have an appt with my doc but, frankly, he is not a celiac specialist and I would like to hear what you wonderful people who live this world with me think. 
 

Could it be refractory celiac? I’m terrified that it may be that. I am only in my early 40s and have 4 kids-all 13 and under. 
 

Any thoughts you have about what is going on or where to go next would be appreciated. 
 

 

[trents]

Welocome to the forum, J Morgan!

Have you investigated your medications to determine if any of them contain gluten? Wheat starch is sometimes used as a filler in pills. You likely would have to contact the manufacturer to get an answer. Also, what about the Chex cereal? Many cereals use malt flavoring even though the main ingredient may be corn or rice. And we have had a number of posts in the past few months from people who get ill when eating breakfast cereals labeled gluten free. We are starting to advise people to look for "Certified Gluten Free" rather than just "Gluten Free." Certified Gluten Free products are subjected to stricter and more consistent testing standards.

[Scott Adams]

Welcome to the forum. This site is great for finding ingredients in prescription meds:

https://dailymed.nlm.nih.gov/dailymed/

Here is a search for it:

https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=COLCHICINE

I don't know the maker of your meds, but try to find out so you can determine if it's gluten-free. I looked through a few of them and most used corn or potato starch.

To me it sounds like you've got a hidden source of gluten somewhere. I would consider stopping the Kate Farms’s nutritional shakes, and make your own shakes or foods for a while.

[J Morgan]

1 hour ago, Scott Adams said:

Welcome to the forum. This site is great for finding ingredients in prescription meds:

https://dailymed.nlm.nih.gov/dailymed/

Here is a search for it:

https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=COLCHICINE

I don't know the maker of your meds, but try to find out so you can determine if it's gluten-free. I looked through a few of them and most used corn or potato starch.

To me it sounds like you've got a hidden source of gluten somewhere. I would consider stopping the Kate Farms’s nutritional shakes, and make your own shakes or foods for a while.

Thank you so much for your reply. I did have my pharmacist go through my meds to see if there were any hidden gluten sources and she said none of the contain gluten. She even called a two manufacturers when she wasn’t sure based on the information she could find in her own. 
 

My GI suggested the Kate farms but I will go w/o tomorrow and see how I feel! 

2 hours ago, trents said:

Welocome to the forum, J Morgan!

Have you investigated your medications to determine if any of them contain gluten? Wheat starch is sometimes used as a filler in pills. You likely would have to contact the manufacturer to get an answer. Also, what about the Chex cereal? Many cereals use malt flavoring even though the main ingredient may be corn or rice. And we have had a number of posts in the past few months from people who get ill when eating breakfast cereals labeled gluten free. We are starting to advise people to look for "Certified Gluten Free" rather than just "Gluten Free." Certified Gluten Free products are subjected to stricter and more consistent testing standards.

I definitely will stop the cereal, it never occurred to me that could be the issue. I’ll check the label to see what it says in the morning. 
 

I did look into the meds (well my pharmacist did) and they all checked out. 
 

 

[trents]

J Morgan, what steriod are you on?

[J Morgan]

Prednisone. I’ve been on it since March…tapering now and down to 7.5 (1.5 pills) a day. 

[trents]

Prednisone loves to cause gastritis: https://www.goodrx.com/blog/what-do-i-need-to-know-before-taking-prednisone/#:~:text=Take it after meals or,cause upset stomach and gastritis.

[Scott Adams]

Also, I checked their web site and those shakes are certified gluten-free, but like many of these type of products they do contain a lot of ingredients, some of which could cause issues in sensitive people. For example some people have issues with legumes (they are gluten-free), and it looks like these contain a lot of pea protein:

• Vanilla Ingredients: Purified Water, Organic Agave Syrup, Organic Pea Protein, Organic Brown Rice Syrup Solids, Organic High Linoleic Sunflower Oil, Organic Agave Inulin, Organic Vanilla Flavor (Natural Flavors, Organic Vanilla Extract), Organic Coconut Oil, Vitamin and Mineral Blend†, Organic Flaxseed Oil, Organic Sunflower Lecithin, Organic Rosemary Extract, Organic Spectra™ Phytonutrient Blend‡.

[J Morgan]

I really can’t tell you how much I appreciate your (and everyone’s) responses to this. Is there is food sensitivity test I can take that can help me figure out if I am sensitive or intolerant to other foods?

10 hours ago, trents said:

Prednisone loves to cause gastritis: https://www.goodrx.com/blog/what-do-i-need-to-know-before-taking-prednisone/#:~:text=Take it after meals or,cause upset stomach and gastritis.

Yes my GI was worried about that, but I have been medicine to prevent that and my endoscopy did not show signs of gastritis I guess? 

[trents]

I do not know of "food sensitivity tests." It's pretty much trial and error - experience. It would likely help if you kept a food diary to be able to connect your symptoms with what you have recently eaten, recently being up to 24 hr. The best way to approach something like this is to establish a baseline where you only consume food that you are positive you tolerate well, say rice or potatoes, for a few days and then start adding in things one at a time.

[J Morgan]

Hi again friends,

I just got back from my primary who has now referred me for an urgent neurology appt. She noticed that I was unable to walk on my tip toes due to weakness on left side and was very shaky on the left side. I also had a positive Barkets(sp?) sign on right side.

So definitely more nervous now about what the heck is going on...  I will keep ya all posted.

1 minute ago, J Morgan said:

Hi again friends,

I just got back from my primary who has now referred me for an urgent neurology appt. She noticed that I was unable to walk on my tip toes due to weakness on left side and was very shaky on the left side. I also had a positive Barkets(sp?) sign on right side.

So definitely more nervous now about what the heck is going on...  I will keep ya all posted.

It is babinski, not barket.

[RMJ]

Celiac disease can cause neurological issues in some people.

I’m glad you’ve got a referral to a neurologist and hope you can get an appointment soon. It must be very difficult wondering what is going on in your body.

[J Morgan]

Thank you RMJ, it is...I'm trying not to go down the google rabbit hole and throw my attention into my work while I wait. I have an appointment next Monday so just a little over a week.

[Scott Adams]

This category has our articles on gluten ataxia, and in some with gluten sensitivity eating gluten can manifest as a nerve/brain disease. The good news is that if this is happening to you it can be reversed with a gluten-free diet:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[J Morgan]

Thank you for this information: I really already am (and have been for 7 years) the strict gluten-free diet. So I hope there is another solution out there. Again, I am so grateful for the response. 

[GFinDC]

On 6/17/2021 at 12:26 PM, Scott Adams said:

Also, I checked their web site and those shakes are certified gluten-free, but like many of these type of products they do contain a lot of ingredients, some of which could cause issues in sensitive people. For example some people have issues with legumes (they are gluten-free), and it looks like these contain a lot of pea protein:

• Vanilla Ingredients: Purified Water, Organic Agave Syrup, Organic Pea Protein, Organic Brown Rice Syrup Solids, Organic High Linoleic Sunflower Oil, Organic Agave Inulin, Organic Vanilla Flavor (Natural Flavors, Organic Vanilla Extract), Organic Coconut Oil, Vitamin and Mineral Blend†, Organic Flaxseed Oil, Organic Sunflower Lecithin, Organic Rosemary Extract, Organic Spectra™ Phytonutrient Blend‡.

 

The full list of ingredients is:

Ingredients

Purified Water, Organic Agave Syrup, Organic Pea Protein, Organic Brown Rice Syrup Solids, Organic High Linoleic Sunflower Oil, Organic Agave Inulin, Organic Vanilla Flavor (Natural Flavors, Organic Vanilla Extract), Organic Coconut Oil, Vitamin and Mineral Blend†, Organic Flaxseed Oil, Organic Sunflower Lecithin, Organic Rosemary Extract, Organic Spectra™ Phytonutrient Blend‡.
† Vitamin and Mineral Blend: Potassium Citrate, Dimagnesium Phosphate, Tricalcium Phosphate, Choline Bitartrate, Sodium Chloride, Potassium Chloride, Sodium Ascorbate, Sodium Molybdate, DL-Alpha-Tocopheryl Acetate, Beta Carotene, Niacinamide, Ferric Pyrophosphate, Vitamin A Palmitate, Calcium Pantothenate, Zinc Oxide, Magnesium Citrate, Copper Sulfate, Manganese Sulfate, Sodium Selenite, Chromium Picolinate, Biotin, Folic Acid, Thiamine Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Phytonadione, Potassium Iodide, Cyanocobalamin (Vitamin B12), Cholecalciferol (Vitamin D3).
‡ Organic Spectra™ Phytonutrient Blend: Extracts and Concentrates from: Organic Broccoli, Organic CoffeeBerry®, Organic Green Tea, Organic Turmeric, Organic Kale, Organic Broccoli Sprout, Organic Acai, Organic Cinnamon, Organic Garlic, Organic Tomato, Organic Blueberry, Organic Carrot, Organic Beet, Organic Raspberry, Organic Spinach, Organic Tart Cherry, Organic Blackberry.

***********************************************************************

That's a lot of different ingredients!  Two of them would make me sick for sure, tomato and carrot.  Not because they are gluten but because I became sensitized to them.

I agree with ditching the Chex cereal.  Several people have reported having symptoms from eating Chex cereals in the past, even the supposedly gluten-free Chex cereals.

6 hours ago, J Morgan said:

Thank you for this information: I really already am (and have been for 7 years) the strict gluten-free diet. So I hope there is another solution out there. Again, I am so grateful for the response. 

COVID can cause GI symptoms also.

[Wheatwacked]

On 6/16/2021 at 8:02 PM, J Morgan said:

I also developed a weird fatty lump on my ribs. 

Sounds like a Fatty Tumor. I have dozens all over including my ribs. 

 

 

They are not cancer. I've had three removed, one on my back, two behind my knee because they caused pain. Show it to your doctor or a specialist.

"A lipoma is a fatty tumor located just below the skin. It isn't cancer and is usually harmless. A lipoma is a slow-growing, fatty lump that's most often situated between your skin and the underlying muscle layer. A lipoma, which feels doughy and usually isn't tender, moves readily with slight finger pressure.Feb 7, 2020" https://www.mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470#:~:text=A lipoma is a fatty,readily with slight finger pressure.

Don't be afraid of prednisone. I recently stopped taking it after eight and a half years.

On 6/16/2021 at 8:02 PM, J Morgan said:

I had COVID, then lots of bronchitis, then pneumonia, then pericarditis. I am still on meds for pericarditis

Long term effects of the COVID?

Did you change diet because of the symptoms or did they start after you changed diet?

On 6/16/2021 at 8:02 PM, J Morgan said:

About 2 weeks ago I started to have INTENSELY bad stomach problems.

On 6/16/2021 at 8:02 PM, J Morgan said:

For the past two weeks I have only had Kate Farms’s nutritional shakes, blueberries, bananas, Chex cereal, rice and fish.

[Jackie Garrett]

On 6/17/2021 at 1:02 AM, J Morgan said:

Hi friends,

This is my first post here! I was diagnosed with celiac via blood work and endoscopy in 2014 and have been on a strict gluten-free diet since then. So strict that when I was accidentally glutened once last year I was so sick I thought I was going to die. I got very familiar with bathroom floor that day with that gluten getting out of my body every way humanly (and at times it felt like inhumanly) possible. 
 

Felt pretty great for years since going gluten-free. In the past 18 months I had COVID, then lots of bronchitis, then pneumonia, then pericarditis. I am still on meds for pericarditis (steroids and something called colchicine). I also developed a weird fatty lump on my ribs. 
 

About 2 weeks ago I started to have INTENSELY bad stomach problems. Explosive diarrhea, super impressive gas and burping and bloating and stomach pain. I am spending about 25% of my work day in the bathroom now. 
 

I also noticed an increase in muscle twitches and cramps on my left side, now my left leg is going numb at random times. In the past two weeks I have fallen up the stairs, in the yard and in my living room. I have lots of beautiful bruises as a result. 
 

For the past two weeks I have only had Kate Farms’s nutritional shakes, blueberries, bananas, Chex cereal, rice and fish. Today I only ate the Kate Farms shake b/c I just can’t imagine eating anything. 
 

I had an endoscopy a week ago and it showed increased lymphocyit….whatever that word is and blunted villi. My endoscopy last year did not show blunted villi. 
 

My TTG test is normal. It was 145 when I was first diagnosed. My blood work shows low protein and low white blood cells. 
 

I don’t drink or smoke. My cholesterol is great. 
 

I have an appt with my doc but, frankly, he is not a celiac specialist and I would like to hear what you wonderful people who live this world with me think. 
 

Could it be refractory celiac? I’m terrified that it may be that. I am only in my early 40s and have 4 kids-all 13 and under. 
 

Any thoughts you have about what is going on or where to go next would be appreciated. 
 

 

It’s just so horrible to become intolerant to things, you have to look at labels all the time, do you think you could be Dairy intolerant or lactose intolerant as we get older this happens to so many of us unfortunately, our enzyme that breaks down Lactose no longer works causing all sorts of symptoms. Just a thought. I hope you get sorted.

[J Morgan]

Thank you so much for your response. I totally agree that it could be dairy related. I stopped eating dairy too. Literally all I eat ATM is fresh fruit, eggs, and nutritional shakes. Everything is gluten, soy, lactose and corn free. I know it takes a while for the lactose to clear your body so maybe I will feel better soon.  

13 hours ago, Wheatwacked said:

Sounds like a Fatty Tumor. I have dozens all over including my ribs. 

 

 

They are not cancer. I've had three removed, one on my back, two behind my knee because they caused pain. Show it to your doctor or a specialist.

"A lipoma is a fatty tumor located just below the skin. It isn't cancer and is usually harmless. A lipoma is a slow-growing, fatty lump that's most often situated between your skin and the underlying muscle layer. A lipoma, which feels doughy and usually isn't tender, moves readily with slight finger pressure.Feb 7, 2020" https://www.mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470#:~:text=A lipoma is a fatty,readily with slight finger pressure.

Don't be afraid of prednisone. I recently stopped taking it after eight and a half years.

Long term effects of the COVID?

Did you change diet because of the symptoms or did they start after you changed diet?

8.5 years is a long time!!  IDK if it is COVID related. I changed my diet after my symptoms started in the hopes of solving the problem. 

[J Morgan]

1 minute ago, J Morgan said:

Thank you so much for your response. I totally agree that it could be dairy related. I stopped eating dairy too. Literally all I eat ATM is fresh fruit, eggs, and nutritional shakes. Everything is gluten, soy, lactose and corn free. I know it takes a while for the lactose to clear your body so maybe I will feel better soon.  

8.5 years is a long time!!  IDK if it is COVID related. I changed my diet after my symptoms started in the hopes of solving the problem. 

The lump is not a lipoma-2 radiologists have been very clear of that. Just a weird buldge? I’m having some neuro issues now (lots of muscle spasms/numbness/tingling in my arms and legs and parts of my abdomen) and am wondering if it is a paralyzed muscle…just hanging there all flabby like?

[Wheatwacked]

Beginner's Guide to the Nutritarian Diet | DrFuhrman.com https://www.drfuhrman.com/blog/210/beginners-guide

[Oldturdle]

What a hideous ordeal you have been through!  As a retired RN, C-difficile comes to mind.  This is severe persistent diarrhea that is only treated by antibiotics.  A stool culture is needed for diagnosis. The prednisone can lower your immune response, and make you more susceptible to infections.  C-diff diarrhea is often very explosive and watery, with a green tinge.  The possitive Babinsky is usually associated with the central nervous system, and I would not be surprised if this is a latent covid thing.   I am so hoping you have a positive out come.  Keep us posted.

 

[DyingFromCeliac]

It could be leaky gut syndrome which celiac causes.  That is when you become allergic to anything you eat regularly.  This happened to me.  I have nonresponsive celiac disease, similar to refractory.

[Jackie Garrett]

5 hours ago, DyingFromCeliac said:

It could be leaky gut syndrome which celiac causes.  That is when you become allergic to anything you eat regularly.  This happened to me.  I have nonresponsive celiac disease, similar to refractory.

Thankyou for your comment, yes I do believe I have leaky gut, I find that coming off Dairy for me is helping me with my symptoms improving so much, sometimes I weaken and have something that I fancy with Dairy in and I soon know with my reactions to it. 

[J Morgan]

On 6/19/2021 at 11:11 AM, Jackie Garrett said:

It’s just so horrible to become intolerant to things, you have to look at labels all the time, do you think you could be Dairy intolerant or lactose intolerant as we get older this happens to so many of us unfortunately, our enzyme that breaks down Lactose no longer works causing all sorts of symptoms. Just a thought. I hope you get sorted.

It really is! I have taken lactose out of my diet and feel a bit better GI wise.

5 hours ago, Jackie Garrett said:

Thankyou for your comment, yes I do believe I have leaky gut, I find that coming off Dairy for me is helping me with my symptoms improving so much, sometimes I weaken and have something that I fancy with Dairy in and I soon know with my reactions to it. 

I have heard that leaky gut is something to consider and have taken out dairy and lactose...which is making my GI symptoms a bit better I think.