Still unsure.....

badastronaut · January 28

Dear forum members,

I’m still trying to find out whether or not I actually have gluten sensitivity or not. Recent blood test showed a slightly elevated Bilirubine and Lipase but an abdominal ultrasound showed no problems with the liver or pancreas. My zinc and folic acid where both too low. When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal. I also have been quite anxious and little bit down for quite some time now and it seems to correlate with my gluten intake. The problem is that my colonoscopy showed no damage to my gut and my blood test for celiac always come back negative. Can you be gluten sensitive without damage to your villi? (I believe that’s what is normally seen in celiac disease).

Thanks for helping! I don’t seem to get anywhere with my doctor so I thought I’d give this forum another try.

Scott Adams · January 28

It sounds like you're navigating a challenging and frustrating situation, and it's understandable why you'd seek clarity. Based on what you’ve described, it’s possible to have gluten sensitivity without the hallmark villous atrophy seen in celiac disease. This condition is often referred to as non-celiac gluten sensitivity (NCGS). Unlike celiac disease, NCGS does not cause the autoimmune damage to the small intestine that’s detectable through a biopsy, and it won’t show up on standard celiac blood tests. However, symptoms like gastrointestinal distress, changes in stool, and even mood issues, such as anxiety or feeling down, have been reported by others with gluten sensitivity.

Your experience with mucus in your stool, stool consistency changes, and mood correlation with gluten intake could be indicative of NCGS. The low levels of zinc and folic acid you mentioned might also hint at some malabsorption issues, even if the root cause isn't celiac disease. It’s worth noting that other conditions, like irritable bowel syndrome (IBS) or a sensitivity to FODMAPs (a group of fermentable sugars in many foods, including wheat), can sometimes mimic gluten sensitivity.

Since your symptoms seem to improve when you avoid gluten, it may be worth continuing a gluten-free diet to see if it helps you feel better overall. You might also consider working with a dietitian who specializes in gastrointestinal health to rule out other potential triggers and ensure your diet is balanced. If you’re still struggling to get answers from your doctor, seeking a second opinion from a gastroenterologist might also help you move forward. You're not alone in this, and I hope you can find some relief and clarity soon!

knitty kitty · January 30

Hello, @badastronaut,

I reread your last post on your previous thread...

"Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks.

"Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore).

"What to do??? Could this be gluten related?"

Your bilirubin is high. The liver breaks down bilirubin. The liver needs Thiamine to break down bilirubin. Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream.

High levels of bilirubin suppress the immune system. High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies. The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing. Thiamine is needed for antibody production. Thiamine deficiency can cause false negatives on Celiac antibody tests. If you are not making a lot of antibodies, you won't have much damage to the small intestine.

Your ALT is high. The liver produces ALT. When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream. Elevated ALT is seen in thiamine deficiency.

Your Lipase is high. Lipase is produced in the liver and pancreas. More Lipase is released by both in thiamine deficiency.

Your gallbladder has been removed. Gallbladder dysfunction is common in thiamine deficiency.

Your Zinc is low. Zinc absorption is enhanced when Thiamine is present. Zinc is not absorbed well in thiamine deficiency.

Your Folate is low. Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium. Thiamine stores can be depleted in as little as three weeks or even as quickly as three days. Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day. If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories).

Anxiety and depression are symptoms of thiamine insufficiency. The brain just thinking uses as much thiamine as muscles do when running a marathon.

I have had thiamine deficiency symptoms like you are experiencing. My doctors did not recognize the symptoms of thiamine deficiency. They just prescribed pharmaceuticals to cover up the symptoms which only made things worse. I had a lot of nutritional deficiencies. I ended up getting a DNA test to check for known genes for Celiac. I have two Celiac genes.

Have you had a DNA test for Celiac genes?

I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies.

High doses of thiamine need to be taken to correct deficiency. Talk to your doctor about administering thiamine intravenously. Thiamine is safe and nontoxic even in high doses. Thiamine is easily excreted in urine if not needed. Improvement of symptoms should be seen within a few hours to a few days. No harm in trying. Process of elimination, etc.

Talk to your doctor and nutritionist. Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured.

I hope this helps you on your journey.

References:

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6662249/#:~:text=CONCLUSION%3A,in men than in women.

https://pubmed.ncbi.nlm.nih.gov/24923275/

https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/

https://pmc.ncbi.nlm.nih.gov/articles/PMC3772304/#:~:text=Based on the patient's history,were also no longer present.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].