Non-responsive?

[Bouhoue]

Hi! I've been diagnosed with celiac in 2018. At the time, my IGA was over 200, and the biopsy results indicated: quasi-total atrophy of the villi and important lymphocytes. Thing is I've been extremely strict and careful with my gluten-free diet. So much so, that on my last blood test, my IGA were at 1. Thing is, I don't feel better. The worse is the tiredness. I literally can sleep on the floor, on a desk. All I want to do is sleep.I never wake up feeling well rested, even when I have a good night of sleep (and I sleep at least 7-8h every night). I have trouble concentrating, and I've ended up at the ER a few times with abdominal pain that doctor's couldn't find the cause of. I got accidentally contaminated a few times, and it is instantaneous. Like, I'm not done eating, and I need the bathroom already. But even when not contaminated, I'll sometimes have random bouts of diarhea or constipation. I recently discovered there is a thing a non-responsive celiac. I plan on asking my doctor for another endoscopy, to see the state of my intestines, but I wanted to know, did anyone lived through a similar experience? I feel very alone, and I can't take it anymore, it's just too much being sick all the time. 

Ps: I know that most people who do not see their symptoms diminished on the gluten free diet often consume gluten without their knowledge. But as I said, a simple cross-contamination sends me running to the bathroom within minutes. And my IGA is now very low. So I don't think that's the problem. But I could be wrong.

[Scott Adams]

There is something called refractory celiac disease, which is celiac disease that does not improve on a gluten-free diet. It is pretty rare, but does happen to some people.  We've summarized lots of articles about it in this category:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

Many people who think they have this, however, are actually getting tiny amounts of cross contamination on a regular basis, which is why they don't recover. This can happen if you eat at restaurants regularly, even ones that claim to have a gluten-free menu.

Since you believe that you have been 100% gluten-free, you may want to look into this. Other things to consider are additional food intolerances, for example oats, which around 10% of celiacs react to (even gluten-free ones), cow's milk/casein, and perhaps other common ones like corn, soy, etc.

Some here recommend trying the Autoimmune Protocol Diet to see if it helps (below), and be sure you are taking a good multi vitamin & mineral supplement, and that none of your supplements, medications, etc., contain any gluten.

 

[Bouhoue]

Thanks for your input. I’ve checked my medecine with my pharmacist and they are all fine. I also live in a very rural area, that has no restaurants that serve gluten-free meals, so I pretty much never eat out. I don’t really eat any oats either. I do consume milk, soy and corn though. I’ll check in with my doctor, but I’ll consider removing some of those from my diet temporarily, to see if that helps.

[Wheatwacked]

Your bloodwork indicates you are being very compliant with the GFD. Well done! GFD does not intrinsically mean a healthy diet with sufficient vitamins and minerals. Some are in fortified wheat products; some are simply lacking in the western diet. Vitamin D deficiency is very common in Celiac Disease, but its effect is mostly improved mental health and mood and around 80 ng/ml (the blood plasma level of a lifeguard in August) some research indicates it moderates the inappropriate autoimmune response.  Increasing vitamin D will help you but I don't think it will make a big difference in your fatigue. It seems that our bodies are designed to maintain a level of 80 ng/ml, but we are told that for our health avoid sun.  Vitamin D and the Immune System

Thiamine (B1) is a vitamin which, among other jobs, is tasked with metabolizing carbohydrates to energy. One serving of "fortified" breakfast foods (which are not part of GFD) has 100% DV.  What is thiamin, or vitamin B1?  "In the United States, people consume around half of their vitamin B1 intake in foods that naturally contain thiamin, while the rest comes from foods that are fortified with the vitamin. So it is quite likely you have had low B1 for a while. Possibly a contributing factor to your fatigue. An easy read on Thiamine's role in carbs to energy: A Review of the Biochemistry, Metabolism and Clinical Benefits of Thiamin(e) and Its Derivatives.

Choline is essential in processing fats through the liver, deficiency can cause muscle damage. Choline is an essential structural component of cell membranes, cell turnover is an essential part of healing. (B1 works inside cells) It is estimated that only 11% of Americans achieve the Adequate Intake (AI) of choline. Could we be overlooking a potential choline crisis in the United Kingdom? 

Doctors are not taught this stuff, and nutrient supplementation is not in their protocols "Not my job, man) so most doctors will not suggest them.

My suggestion as a start, raise your plasma D quickly with 10,000 IU a day supplement. Increase your Thiamine intake to 1000 mg a day to replenish levels and Increase choline intake to 1000 mg a day, preferably as phosphatidyl choline because that is form most of our food is in. This amount of B1 and Choline are well below the RDA tolerable upper limit. It may help, but it will not hurt and there are no tests that will predict your response.  Low homocysteine levels may indicate sufficient choline. The RDA upper limit of vitamin D is based on insufficient information. The calcification they fear is a very rare condition and can be monitored with blood vitamin D, blood Calcium and blood PTH levels.  Vitamin D Is Not as Toxic as Was Once Thought

Appropriate nutrient supplementation in celiac disease

 

 

[knitty kitty]

On 4/28/2022 at 8:41 PM, Bouhoue said:

Thanks for your input. I’ve checked my medecine with my pharmacist and they are all fine. I also live in a very rural area, that has no restaurants that serve gluten-free meals, so I pretty much never eat out. I don’t really eat any oats either. I do consume milk, soy and corn though. I’ll check in with my doctor, but I’ll consider removing some of those from my diet temporarily, to see if that helps.

Hi!

Certain types of medications can cause continuing gastrointestinal symptoms.  Nsaids, PPI's and SSRIs.  Which medications are you taking?

Dairy corn, and soy are not included in the Autoimmune Protocol Diet (AIP diet).  This diet has been shown to promote intestinal healing.  I've found it to be very helpful in reducing the inflamation and bloating.  And, if you keep a food journal, you can easily spot problematic foods.

Fatigue can be caused by nutritional deficiencies.  B12 deficiency or thiamine deficiency can cause bad fatigue.  Are you taking a multivitamin? B Complex?  Vitamin D will definitely help.  

[Lifelong Celiac]

On 4/28/2022 at 12:02 PM, Bouhoue said:

Hi! I've been diagnosed with celiac in 2018. At the time, my IGA was over 200, and the biopsy results indicated: quasi-total atrophy of the villi and important lymphocytes. Thing is I've been extremely strict and careful with my gluten-free diet. So much so, that on my last blood test, my IGA were at 1. Thing is, I don't feel better. The worse is the tiredness. I literally can sleep on the floor, on a desk. All I want to do is sleep.I never wake up feeling well rested, even when I have a good night of sleep (and I sleep at least 7-8h every night). I have trouble concentrating, and I've ended up at the ER a few times with abdominal pain that doctor's couldn't find the cause of. I got accidentally contaminated a few times, and it is instantaneous. Like, I'm not done eating, and I need the bathroom already. But even when not contaminated, I'll sometimes have random bouts of diarhea or constipation. I recently discovered there is a thing a non-responsive celiac. I plan on asking my doctor for another endoscopy, to see the state of my intestines, but I wanted to know, did anyone lived through a similar experience? I feel very alone, and I can't take it anymore, it's just too much being sick all the time. 

Ps: I know that most people who do not see their symptoms diminished on the gluten free diet often consume gluten without their knowledge. But as I said, a simple cross-contamination sends me running to the bathroom within minutes. And my IGA is now very low. So I don't think that's the problem. But I could be wrong.

I was diagnosed with refractory celiac disease after being on a strict GFD after several years and having IGA counts under 5 but with endoscopy imaging after five years showing villi still non existent. I was still suffering most of the same symptoms prior to my GFD and all the symptoms you listed. My GI suggested getting more food allergy testing done. I did and found out I'm allergic to dairy, eggs, soy, corn, red meat and several raw vegetables. Have been on that diet now for an additional three years and while my weight has been more stable I still suffer from all the same symptoms. I find taking supplements don't work either as we have no villi and therefore have a difficult time absorbing the nutrients in the supplements. I feel your pain and wish I had better news and am hopeful together we can figure something out here that will help us feel better. Living in the bathroom and constantly tired has become the norm even on an allergen free diet and that's not normal. 

[Wheatwacked]

38 minutes ago, Lifelong Celiac said:

I find taking supplements don't work either

How much of what are you taking? Other meds involved? You need well over the minimum 100% DV to compensate for the malabsorption. For example: the RDA for choline is 450 mg, the tolerable upper limit is 3500 mg. The upper limit is the equivalent of 24 large, hard-boiled eggs or 56 cups of cooked broccoli. It will affect your metabolism of fats, cell membranes, neurotransmitters. The DV for potassium is 4700 mg per day the highest of the essential minerals, and diarrhea causes potassium depletion through the colon, and it is absorbed by the small intestine. Potassium is a worldwide health concern. 

Choline Fact Sheet for Health      Professionals  Potassium Fact Sheet for Health Professionals

 

Edited May 4, 2022 by Wheatwacked

[Bouhoue]

Thank you everyone! I read everything you posted and had a doctor's visit today. We'll be doing a full blood checkup for B12, potassium, and a bunch of others. He also checked with me as one of my medications is a SSRIs. He said it could cause SOME of my symptoms, but definitely not all of them. So off to the waiting list for a gastroenterologist I am (as I sadly didn't have one assigned. One diagnosed me, but he is now retired and I haven't got another). We'll check for all the other possible culprits then. I'll keep you updated, but it could take a few months. Also, I'm sorry to hear that you are not doing well, Lifelong Celiac. It is really not pleasant to live like this. I hope that you get a bit better eventually. Maybe discuss options with your doctor?

[C4Celiac]

if your immune response is off then you can't be unresponsive...

 

clearly your body responds to no gluten