NCGS, celiac history with ulcerative colitis diagnosis

[cc284]

Hello,

I‘m a long time reader of this forum and would first like to thank everyone involved here. This forum has helped me tremendously. I would like to share my experience in the last 8 months. Perhaps this will also be helpful. And I still have many questions and am very grateful for any help.

My diet is still very restricted to this day. Everything is home cooked. Every day. After 8 months gluten free and later also dairy free, grain free only rice, FODMAP diet, my symptoms got a lot better but I feel like I’m super sensitive to everything I eat.
I suspect I could have NCGS, SIBO or leaky gut because of the negative celiac genes? What do you guys think? I don’t know if I‘m on the right track. I think it takes forever to get better. My stool is still not normal. I am thankful for any help.

Short version: 

38 years old. Mother and maternal grandmother both diagnosed with celiac disease. Endoscopy with villous atrophy. Father passed away ten years ago from colon cancer.

2012: Healthy whole food diet. Meat, gluten, soft drinks, alcohol and processed foods only on weekends. Symptoms are starting to appear:

Steatorrhea and soft stool. Sometimes mixed with blood once a month. No abdominal pain. No diarrhea or bowel urgency. Fatigue, brain fog, frequent urination at night, urinary tract infection, gas and bloating, mild gynecomastia, knee pain, foot pain/metatarsal pain, stool with blood. Symptoms are mild. No flare ups. 

2016: First visit to family doctor.Blood tests all normal. Celiac blood tests negative. Doctor told me not to worry about blood in the stool.

February 2022: Symptoms more severe. Colonoscopy. Noncancerous polyp. Inflamed rectum with normal crypt architecture. No crypt distortion. Inflamed appendix. Switched to gluten free diet. No medications. Gastrointestinal infection for 1 week. Urinary tract infection for 1 week. High calprotectin levels: 320 μg/mg. No signs of bacterial or viral infection. Ulcerative Colitis diagnosis.

March 2022: Gluten free diet. All symptoms got slightly better but more sensitive to food. Severe brain fog and fatigue. Developed food intolerances. 

July 2022: Again all symptoms better. Still strong brain fog, fatigue, loose stools. Very restricted diet. Too much meat. Weight loss. High uric acid levels. Gout flare. Diet changed.

September 2022: No blood in stool since February. Still occasional soft stools. Very strict FODMAP diet.

October 2022: New blood tests. Everything normal. Low calprotectin levels. 70 μg/mg. Negative celiac genes.

Covid infection. All gastrointestinal symptoms are back. Fever. Diarrhea. One time diarrhea with a little bit of blood. 

[cc284]

Long version :

I‘m 38 years old and had the same symptoms for almost ten years. Steatorrhea and soft stool. Sometimes mixed with blood once a month. No abdominal pain. No diarrhea or bowel urgency. Symptoms were mild and mostly constant. No signs of flare ups and remissions. I never had a normal Bristol stool for the last ten years. Fatigue, brain fog, frequent urination at night, urinary tract infection, gas and bloating, mild gynecomastia, knee pain, foot pain/metatarsal pain, stool with blood. My diet was pretty healthy with lots of vegetables. Gluten free and everything home cooked during the week. I have always suspected gluten as a problem because of our family history. I would call it a whole food diet. Meat, gluten, soft drinks, alcohol and processed foods only on weekends. Non smoker. Not overweight. Exercising always twice a week.

My mother and maternal grandmother were both diagnosed with celiac disease. Endoscopy with villous atrophy. My dad passed away ten years ago from colon cancer.

2016: I talked to my family doctor. Blood tests were all normal. Celiac blood tests were negative. He told me not to worry about the blood in my stool.

2021: I felt that the symptoms worsened. I still thought that I’m healthy and everything is normal. 

February 2022: I decided to have a colonoscopy. The gastroenterologist could find an inflamed rectum. The inflamed area was 5 cm in length. A small polyp that he removed. And surprisingly an inflamed appendix. He took samples from the inflamed areas. 

After the colonoscopy I got very sick. The symptoms worsened like never before.

I am sure I got a gastrointestinal infection. We had a big family reunion and I suspect we all got infected together there. It could not be a coincidence because we all got sick at the same time. I had severe diarrhea mixed with a lot of blood for a week. I've never had it this strong before. For the first time I had abdominal discomfort on the lower right side. Very scared because of my appendix. And then a severe urinary tract infection for another week. 

During this time I have read countless articles and studies about celiac disease and IBD. I immediately switched to a gluten free diet. 

My gastroenterologist told me that he received the histologic results. Noncancerous polyp. Inflamed rectum with normal crypt architecture. No crypt distortion. Inflamed appendix. High calprotectin levels: 320 μg/mg. No signs of bacterial or viral infection. He said that he was sure it’s Colitis Ulcerosa, Appendicitis and definitely not a gastrointestinal infection. A mild version. No ulcers but with granulation on the rectal mucosal linings.

He prescribed me mesalazine for daily use and said I have to start therapy because the inflammation will not stop on its own. And it can spread to the entire colon. Surprisingly he never asked me about my family history. And he did not take any blood tests. He said CRP levels would probably be slightly elevated. Calprotectin levels would be much more significant than blood tests.

I told him that I suspect that there is a connection between my celiac family and my symptoms. He was very surprised and said we should check for celiac disease with an endoscopy. He told me that I have to eat wheat daily for two weeks for the blood test to work. I was gluten-free for about two weeks and had to stop the gluten challenge after two days. I felt that I got very sick again. I also tried the prescribed mesalazine for a few days and then stopped. I immediately switched back to a gluten free diet. I had to go back to work and canceled the endoscopy.

It was and still is very hard for me not to follow his advice. But I was so convinced that my problem was food related and that my inflammation in the rectum has something to do with it.

Marc 2022: AfterI switched to gluten free I felt that something changed. I felt better but I suddenly became much more sensitive to other foods. Changing my diet with gluten free products did not work at all for me. I started with a food diary. My symptoms became less severe. Still a lot of fatigue and brain fog. It took months to get slightly better. Sometimes I had to go home because of the severe fatigue. I never had it like this before. I had better stool consistency. Never blood again. Less brain fog and fatigue. But still a lot of problems with my new diet. 

July 2022: I ate too much meat because I lost so much weight. I had to go to the hospital because of severe foot pain. They told me that my uric acid levels were elevated and it’s a gout flare. I didn’t take the medicine. Changed my diet again. Foot pain and swelling on my toe went away.

September 2022: With the help of my food diary I can tell that I get urinary tract infection symptoms from fructose. I cannot eat grains  Especially grains from corn. Brain fog, fatigue and soft stools from casein. Lactose free did not work for me. I lost a lot weight during the last months. My diet consists of potatoes, vegetables, chicken, poultry. Sometimes gluten free labeled rice. I follow a strict FODMAP diet and discovered that fructans are also causing me problems. Fatigue, brain fog, frequent urination at night, urinary tract infection, gas and bloating, mild gynecomastia, knee pain, foot pain/metatarsal pain all got better. The best news was that I have not had blood in my stool since February. I haven't had that in over 10 years. All of my symptoms got better. But some symptoms still come back occasionally after almost 8 months strict gluten free. I felt pretty good and could eat more and more food. But I still had soft stool from to time. 

I decided to go back to my family doctor. I asked for a general blood test to check for vitamin and iron deficiencies, anemia. And for another calprotectin test to check for the inflammation. I also wanted to take a test for celiac genes.

This week I got my results and I am still very surprised. I have absolutely normal blood levels. No pathological findings. My calprotectin level is now only slightly elevated: 70 μg/mg. IBD is highly unlikely with these low levels. No more inflammation.

To my biggest surprise I received the following results.: „Both DQ2 and DQ8 are not detectable. The few celiac patients without DQ2 and DQ8 are predominantly positive for HLA DRB 1*04.  HLA DRB 1*04 not detectable.“ 

Two weeks ago I got Covid. I had severe fever and diarrhea for two days. And all of my gastrointestinal symptoms flared up heavily. One time diarrhea with a little bit of blood. It took almost two weeks to get better again. I cannot describe how frustrated I felt Again abdominal discomfort on the lower right side. And again scared because of my appendix. 

[trents]

First, to assume you can't have celiac disease because you don't have DQ2 or DQ8 genes may not be a valid conclusion. Research is showing those may account for the overwhelming percentage of celiac cases, there is a small percentage of those with celiac disease who don't have either of those genes. We just don't have all the genetic factors nailed down yet.

Second, I think leaky gut is associated with celiac disease rather than NCGS.

Have you undergone either celiac antibody testing or had an endoscopy with biopsy to rule out celiac disease?

Are you still eating oats, even gluten free oats? A certain percentage of celiacs react to the oat protein avenin like they do gluten.

Finally, are you taking any vitamin and mineral supplements and if so, please give details.

[trents]

12 minutes ago, cc284 said:

I told him that I suspect that there is a connection between my celiac family and my symptoms. He was very surprised and said we should check for celiac disease with an endoscopy. He told me that I have to eat wheat daily for two weeks for the blood test to work. I was gluten-free for about two weeks and had to stop the gluten challenge after two days. I felt that I got very sick again. I also tried the prescribed mesalazine for a few days and then stopped. I immediately switched back to a gluten free diet. I had to go back to work and canceled the endoscopy.

This paragraph is confusing.

First, you talk about the GI doc wanting to do an endoscopy with biopsy but then you say he told you you had to be back on gluten for two weeks before the blood test would be valid. Do you mean to say he wanted to do a blood antibody test for celiac disease before he did an endoscopy/biopsy? The other thing that is confusing is that the Mayo Clinic guidelines for a pretest gluten challenge when preparing for blood antibody testing is 6-8 weeks, not 2 weeks. And the pretest gluten challenge in preparation for an endoscopy/biopsy is 2 weeks. Please clarify.

[cc284]

Thank you so much for your fast reply. My doctor told me it‘s 99:9% unlikely that I can develop celiac disease. I‘ve read about people had negative celiac genes but still were positive with an endoscopy. So yes, I take his words not quite so seriously. I had a celiac antibody test in 2016. it was negative. But my doctor didn‘t tell me that I had to eat wheat daily weeks before taking the test. 
No I haven‘t tried oats. I tried chickpeas a couple of months ago. I couldn‘t tolerate them. I don‘t think they were labeled gluten free.

No I don‘t take any vitamin or mineral supplements.

[cc284]

8 minutes ago, trents said:

This paragraph is confusing.

First, you talk about the GI doc wanting to do an endoscopy with biopsy but then you say he told you you had to be back on gluten for two weeks before the blood test would be valid. Do you mean to say he wanted to do a blood antibody test for celiac disease before he did an endoscopy/biopsy? The other thing that is confusing is that the Mayo Clinic guidelines for a pretest gluten challenge when preparing for blood antibody testing is 6-8 weeks, not 2 weeks. And the pretest gluten challenge in preparation for an endoscopy/biopsy is 2 weeks. Please clarify.

Yes, exactly. I‘ve never had an endoscopy. He said we should do a blood antibody test for celiac disease. And only with a positive antibody result we will do an endoscopy. Yes, I have also heard that the preparing is much longer. He told me two weeks would be enough for it. 

[trents]

I'm not sure I would trust that doctor. He doesn't seem to know some of the basics about testing for celiac disease. Do you have options for choosing another physician? Even so, you would need to go back on gluten for any kind of testing.

[cc284]

4 minutes ago, trents said:

I'm not sure I would trust that doctor. He doesn't seem to know some of the basics about testing for celiac disease. Do you have options for choosing another physician? Even so, you would need to go back on gluten for any kind of testing.

Yes, it‘s so frustrating. My family doctor doesn‘t know anything about celiac disease. My gastroenterologist is also not a celiac specialist. I also always felt like he sees me as a colitis patient. He always said at the beginning that the whole thing has nothing at all to do with nutrition. Only after I told him about my celiac family, he became suspicious. What's more, in true IBD, the inflammation never goes down on its own without medication. 

[cc284]

There are other options, but unfortunately no celiac specialists in my area. For me, it's also clear that I don't want to do a gluten challenge anytime soon.

[trents]

Seems like your are stuck in no man's land. I certainly would advise starting some gluten-free vitamin and mineral supplements. A lot of health issues are tied to nutritional deficiencies and if you do have celiac disease the chances are very high you have some deficiencies, especially with your restricted diet.

[cc284]

Yes, thank you that‘s a great advice. I wanted to do a vitamin deficiency test to check if there is anything abnormal. Iron and B12 levels are normal.The rest has not been tested yet. But I have also read that the vitamin tests are not always accurate. 

[trents]

Vitamin tests measure the amount of vitamins circulating in the blood but do not address the more important question of how much of that is actually getting into the cells. 

[cc284]

Thank you. This is very interesting but unfortunately also frustrating.

[huttons16]

On 10/15/2022 at 10:31 AM, cc284 said:

I decided to go back to my family doctor. I asked for a general blood test to check for vitamin and iron deficiencies, anemia. And for another calprotectin test to check for the inflammation. I also wanted to take a test for celiac genes.

This week I got my results and I am still very surprised. I have absolutely normal blood levels. No pathological findings. My calprotectin level is now only slightly elevated: 70 μg/mg. IBD is highly unlikely with these low levels. No more inflammation.

Hello!

I've been in a somewhat similar situation - except I do have celiac confirmed. I was diagnosed 16 years ago when I was 10.

I have been doing relatively well with a gluten-free diet until November 2021 when I had a bad reaction to antibiotics and the COVID vaccine. The past year I have been dealing with soft stools, Steatorrhea, and calprotectin was at 80 which prompted my GP to send me to a Gastroenterologist to check on my celiac. We went down the path of IBD due to an elevated CRP blood test. I was negative for everything in my colonoscopy.

I recently sought help from a naturopath/functional medicine Dr since my symptoms were not improving and it had been almost a year of these symptoms. We have tested my bacteria levels in a stool sample and some other foods that my body treats as wheat. Might be another place to look for answers if that is something available to you. I have been put on a bunch of vitamins, and probiotics and while we're waiting to hear back about other foods I've been doing an anti-inflammatory diet and have already seen gut improvements and symptom improvements. We're also going to do a SIBO (small intestine bacterial overgrowth) test to confirm if that is something as well. Hope this might help find more answers as I know how frustrating the path of trying to feel better can be!

[Posterboy]

Cc284 et Al,

Many of your remaining symptom's can be becasue of  Co-morbid Vitamin deficiencies.

See this thread about how Low Zinc levels can lead to elevated Calprotein levels.

Also Elevated CRP levels can be treated with Magnesium, Zinc and Thiamine supplementation and other B-Vitamins like Niacin often....

Here is the research on Magnesium and elevated CRP levels.

Entitled "Dietary magnesium intake is inversely associated with serum C-reactive protein levels: meta-analysis and systematic review"

Where they note quoting their conclusion....

"Conclusions: This meta-analysis and systematic review indicates that dietary Mg intake is significantly and inversely associated with serum CRP levels. The potential beneficial effect of Mg intake on chronic diseases may be, at least in part, explained by inhibiting inflammation."

I wrote a Posterboy blog post that discussed how to Supplement to  help your Co-Morbid Vitamin deficiencies....

When you have both (Vitamin Deficiencies and Genetic Diseases) happening in the same person only supplementation can help you reverse/eliminate the remaining Vitamin deficieincies.

Usually 3 to 4 months of fruequent B-Complex (IE with meals or 2x day which ever is easiest) and Magnesium Supplementation is enough to notice a sustainable difference.

Vitmain D is  helpful as well.....since it is commonly low in those with alot GI problems.

Here is a blog post about it that might help you too.....

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Posterboy]

Cc284 et Al,

I wanted to share this research earlier but I got in a hurry,,,,I guess and didn't get to tell you about it...

On 10/15/2022 at 12:27 PM, cc284 said:

High calprotectin levels: 320 μg/mg. No signs of bacterial or viral infection. Ulcerative Colitis diagnosis.

If you are not taking a B-Complex now.....you need to begin taking it with Meals....

The Niacin in it can help your UC....

Here is the research on it....

Entitled "Niacin ameliorates ulcerative colitis via prostaglandin D2-mediated D prostanoid receptor 1 activation"

https://pubmed.ncbi.nlm.nih.gov/28341703/

Trytophan might be helpful as well....here is the research on how Trytophan can help you.

Entitled "Gut microbes in celiac disease show impaired metabolism of dietary tryptophan, according to researchers at McMaster University"

https://www.gutmicrobiotaforhealth.com/gut-microbes-in-celiac-disease-show-impaired-metabolism-of-dietary-tryptophan-according-to-researchers-at-mcmaster-university/

I hope this is helpful but it is not medical advice.

Posterboy by the grace of God,

[cc284]

Thank you for writing and the information. I wanted to wait a little longer but decided to update and tell about the current condition. Perhaps it is also helpful to you.
November 2022: Everything is almost back to normal. I have almost no symptoms anymore. The last thing that was still missing was stool consistency. Finally I have normal stool every day for 4 weeks.I haven't had that in over 10 years. I have a lot of energy now. It feels great. No more fatigue, brain fog,… I still have to gain some weight. I continued to read a lot and came to the conclusion that my main problem was intestinal permeability. I think it‘s the root cause of a lot autoimmune diseases. This also includes celiac disease. It took almost 8 months of a strict diet change. The AIP diet and low FODMAP comes closest to what I eat. I have not taken a single supplement. But a lot of vegetables and everyday home cooking. What helped me the most, was to completely stop eating sugar, fructose (no fruits at all), only water, no grains, no legumes, (only rice after 6 months) and no diary. Lots of potatoes, meat, fish, seafood and vegetables. It was and still is not easy but it is so rewarding. I feel completely different than last year. 

[cc284]

23 hours ago, huttons16 said:

Hello!

I've been in a somewhat similar situation - except I do have celiac confirmed. I was diagnosed 16 years ago when I was 10.

I have been doing relatively well with a gluten-free diet until November 2021 when I had a bad reaction to antibiotics and the COVID vaccine. The past year I have been dealing with soft stools, Steatorrhea, and calprotectin was at 80 which prompted my GP to send me to a Gastroenterologist to check on my celiac. We went down the path of IBD due to an elevated CRP blood test. I was negative for everything in my colonoscopy.

I recently sought help from a naturopath/functional medicine Dr since my symptoms were not improving and it had been almost a year of these symptoms. We have tested my bacteria levels in a stool sample and some other foods that my body treats as wheat. Might be another place to look for answers if that is something available to you. I have been put on a bunch of vitamins, and probiotics and while we're waiting to hear back about other foods I've been doing an anti-inflammatory diet and have already seen gut improvements and symptom improvements. We're also going to do a SIBO (small intestine bacterial overgrowth) test to confirm if that is something as well. Hope this might help find more answers as I know how frustrating the path of trying to feel better can be!

I think you are on the right track. The AIP diet will definitely help you. You have to stop eating gluten free processed food and stick to a healthy whole food diet. It is really not easy because you have to cook everyday. My food diary also helped me to eliminate food that I couldn’t tolerate. I have read that probiotics can definitely help. I never took them. So great that you see improvements. Wish you all the best. My gastroenterologist said it doesn‘t matter what I eat. That it is not food related. He was 100% wrong. 

[cc284]

20 hours ago, Posterboy said:

Cc284 et Al,

I wanted to share this research earlier but I got in a hurry,,,,I guess and didn't get to tell you about it...

If you are not taking a B-Complex now.....you need to begin taking it with Meals....

The Niacin in it can help your UC....

Here is the research on it....

Entitled "Niacin ameliorates ulcerative colitis via prostaglandin D2-mediated D prostanoid receptor 1 activation"

https://pubmed.ncbi.nlm.nih.gov/28341703/

Trytophan might be helpful as well....here is the research on how Trytophan can help you.

Entitled "Gut microbes in celiac disease show impaired metabolism of dietary tryptophan, according to researchers at McMaster University"

https://www.gutmicrobiotaforhealth.com/gut-microbes-in-celiac-disease-show-impaired-metabolism-of-dietary-tryptophan-according-to-researchers-at-mcmaster-university/

I hope this is helpful but it is not medical advice.

Posterboy by the grace of God,

Thank you so much for sharing. Yes, definitely. I am sure it was because of vitamin deficiencies. But I think the reason was because of the intestinal permeability that vitamins could not be absorbed properly. It took a long time that my digestion has improved again.