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Low immune system after going gluten free
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- jkinloch replied to jkinloch's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Difficulty with doctors
Yes, in 2017 I had all of the blood tests and several endoscopies. All of these indicated Celiac Disease. I have had endoscopies every few years since, and my last one was a year ago. This is a new GI doctor for me. The results he put into my medical record said, "No evidence of Celiac Disease". Today, he recommended that I start eating gluten again... -
- trents replied to jkinloch's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Difficulty with doctors
Welcome to the forum, @jkinloch! That is unusual because celiac disease is a genetically based autoimmune disorder. One the latent genes are triggered such as to produce active celiac disease they are "on" permanently. Celiac disease doesn't go away. But first, let's establish some fact-based history before we speculate any further about how this... -
- jkinloch posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2
Difficulty with doctors
Has anyone else had a gastroenterologist diagnose you with Celiac Disease years ago, only to tell you in 2025 you don't have Celiac Disease? I'm really frustrated about this. The doctor tried to make me feel better by saying, "Well, you can eat bread again. That's good, right?" I am mostly upset about the 8 years of insults from restaurants for ordering... -
- Scott Adams replied to FayeBr's topic in Coping with Celiac Disease3Corn reaction and ataxia
Corn protein (zein) is considered safe for those with celiac disease, however, some people may have a separate food intolerance to it. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary... -
- Scott Adams replied to Dora77's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Is it safe to eat? (airborn flour)
It’s great that you’re being so cautious about gluten exposure, especially since you’re asymptomatic and rely on diligence to stay safe. Regarding your mom’s gluten-free dough preparation, there is a risk of cross-contact if gluten-containing flour was used in the same area, even if surfaces and hands were washed. Airborne gluten flour can settle on unco...
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Yes, in 2017 I had all of the blood tests and several endoscopies. All of these indicated Celiac Disease. I have had endoscopies every few years since, and my last one was a year ago. This is a new GI doctor for me. The results he put into my medical record said, "No evidence of Celiac Disease". Today, he recommended that I start eating gluten again to see if I get sick from it. I did not misinterpret him or my family practitioner. I asked several times if his diagnosis actually meant that my Celiac Disease is well controlled. He said no. I'm absolutely gob-smacked. -
Welcome to the forum, @jkinloch! That is unusual because celiac disease is a genetically based autoimmune disorder. One the latent genes are triggered such as to produce active celiac disease they are "on" permanently. Celiac disease doesn't go away. But first, let's establish some fact-based history before we speculate any further about how this change of tune by the GI doc came about. So, first of all, how did this GI doc arrive at his original dx through normal celiac testing protocols. Typically, this involves two stages of testing. The first is a blood test looking for antibodies that are specific for celiac disease. The second is an endoscopy with biopsy looking for damage to the lining of the small bowel that celiac disease causes. Were either or both of these done years ago. If so, what were the results? Were these tests repeated when he/she recently declared you to not have celiac disease? Are you sure you did not misinterpret what the doc said to mean you no longer had celiac disease when what he really meant was that your celiac blood antibodies had now returned to normal and the lining of hour small bowel had now healed. That would not be the same as "not having celiac disease".
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Has anyone else had a gastroenterologist diagnose you with Celiac Disease years ago, only to tell you in 2025 you don't have Celiac Disease? I'm really frustrated about this. The doctor tried to make me feel better by saying, "Well, you can eat bread again. That's good, right?" I am mostly upset about the 8 years of insults from restaurants for ordering gluten-free, horrible treatment from airlines for being gluten-free, and how much work I have gone through making sure that not even a grain of gluten enters my body. I don't even know what to do at this point? Anyone else?
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By Scott Adams · Posted
Corn protein (zein) is considered safe for those with celiac disease, however, some people may have a separate food intolerance to it. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. -
By Scott Adams · Posted
It’s great that you’re being so cautious about gluten exposure, especially since you’re asymptomatic and rely on diligence to stay safe. Regarding your mom’s gluten-free dough preparation, there is a risk of cross-contact if gluten-containing flour was used in the same area, even if surfaces and hands were washed. Airborne gluten flour can settle on uncovered food, utensils, or surfaces, so it’s possible that your gluten-free dough could have been contaminated. For peace of mind, it might be best to avoid eating it this time and discuss with your mom the importance of preparing gluten-free items in a completely separate, clean area to avoid cross-contact. As for whether gluten dough should be made in the house, it’s generally safer to avoid it altogether if possible. Gluten flour can stay airborne for hours and settle on surfaces, increasing the risk of accidental exposure. If gluten-containing baking is necessary, it should be done in a separate space with thorough cleaning afterward, and gluten-free items should be prepared first. Regarding EPI (exocrine pancreatic insufficiency), celiac disease can sometimes lead to EPI due to malabsorption and damage to the small intestine, which can affect pancreatic function. It’s worth discussing this with your doctor, as they may want to run tests to confirm EPI and explore treatment options. It’s encouraging that your blood work for antibodies is negative, but since you’ve had negative results even when consuming "may contain gluten" foods, it’s possible that your antibody levels aren’t highly sensitive to low-level exposure. Replacing basic spices like pepper with certified gluten-free options is a good step, as even small amounts of gluten can cause damage over time, even if you don’t feel symptoms.
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