Xravith

@knitty kitty 

Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday.

I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better. 

I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 

On 10/11/2025 at 7:59 PM, knitty kitty said:

Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease.

Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.  

If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.  

Talk to your doctor about doing a genetic test to look for Celiac markers.  

I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  

Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?

13 hours ago, knitty kitty said:

Welcome to the forum, @Xravith.

I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins. 

The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.  

Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D.. 

Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine.

Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.  

Keep us posted on your progress.

P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  

Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse.

This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly.

I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.

Thank you, really. 

I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem.

It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease.

I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.

Hello,
I've been diagnosed with IBS since I was little. I’ve visited many doctors because my intestines have always been very reactive to food. I have chronic swelling, and I struggle to gain weight.

This year has been worse than others: I started noticing fatigue, loss of muscle mass, and many digestive problems, especially after consuming products with gluten. My doctor suggested that this might be due to some imbalance of gut bacteria, so I started taking Bifidobacterium Infantis supplements.

However, my symptoms have been getting worse every day. I experience nausea, frequent abdominal pain, migraines, and palpitations after eating. I had these symptoms before, but now they are more intense. I thought I might have Non-celiac gluten sensitivity or Celiac Disease, so I took a home test for Celiac, and it came out negative (though there may have been an error—I was nervous and accidentally contaminated the sample with air bubbles).

Based on your experiences, should I pursue further medical exams for Celiac? I’m worried about being underweight and about my blood test results, which, even if still within normal ranges, have been declining each year.