Symptom

[Natynat]

I just recently started to wonder if I have a gluten sensitivity after 2 years of ongoing symptoms that I didn’t think were symptoms of gluten sensitivity. Has anyone else experienced the same? After having my son 2 years ago I started to constantly have episodes of lethargy on/off and just anxiety. It usually lasts about 30 minutes and it’s right after I eat. This whole time I have thought it is heart related because I just feel very agitated after I eat sometimes, but I finally was able to get a holter monitor that I’m currently wearing and it has made me more aware of when it is that I feel like that and it seems to be food related. Has anyone experienced anything like that? I guess the only thing that makes me question weather it could be the gluten is that I don’t have any other symptoms as far as stomach problems or anything like that. But my joints do hurt sometimes (Rheumatologist ruled out anything there).

[trents]

Welcome to the forum, Natynat!

Do you experience this no matter what you have eaten or are these symptoms tied to certain foods? Gluten is a protein found only in wheat, barley and rye. The symptoms you describe also sound like they could be caused by say, fructose intolerance or some kind of blood sugar swing. Have you been tested for either diabetes or hypoglycemia?

Edited August 26, 2024 by trents

[Natynat]

I’m starting to notice that it does seem to be tied to certain foods. For the last couple of days I have tried avoiding gluten and do not feel the fatigue/anxiety that I would usually feel right after eating. Yesterday I went gluten free most of the day and then had about 1/2 cup of macaroni salad for lunch & felt the fatigue/anxiety right away. have been tested for diabetes and all is good with my sugar levels.

[trents]

Just for the sake of clarity, there are two gluten disorders that often get confused because the terminology is used carelessly. There is celiac disease, aka, "gltuen intolerance" and there is NCGS (Non Celiac Gluten Sensitivity), aka, "gluten sensitivity". There is overlap in their symptoms but the distinguishing factor is that celiac disease causes inflammation in the small bowel lining that, over time, damages this lining and eventually results in compromised ability to absorb vitamins and minerals from the food we eat. There are specific blood antibody tests for celiac disease that can be run to diagnose this condition but one must not begin the gluten free diet ahead of the tests. There is also an endoscopic procedure with a biopsy of the small bowel lining that is usually done as a follow up diagnostic procedure to the antibody testing if the antibody testing produces positive results. NCGS, on the other hand, may produce some of the same symptoms as celiac disease but it does not damage the lining of the small bowel. There currently is no testing for NCGS, though it is 10x more common than celiac disease. celiac disease must first be ruled out. Both conditions require total abstinence from gluten. Some experts feel that NCGS can be a precursor to the development of celiac disease.

So, my suggestion is that you pursue the celiac antibody testing. Ask for a more comprehensive antibody panel to be ordered which would include:

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

[Natynat]

Thank you! Is there any benefit to getting a diagnostic on this? Noticing that I feel SO much better when I don’t eat gluten, I don’t want to eat it because I don’t want to feel awful again. How long do I have to be eating it for it show up in tests?

[trents]

The most recent "gluten challenge" guidelines for those having been gluten free for a long period of time and wishing to be tested are the daily consumption of 4-6 slices of wheat bread (or the gluten equivalent - 10g) for at least two weeks prior to the antibody test blood draw. I would recommend mor like four weeks to be sure.

Many people find they have a harder time sticking to the gluten free diet without an official diagnosis. They feel better and let down their guard. Then there is the whole huge piece of the social impact on one's life that the gluten free diet imposes. You can't just go over to someone else's house to eat when they invite you to dinner or go out to any restaurant with friends and family. If you are married with kids, the others in your own household may feel imposed upon by having to participate in your restrictions. If you and the others in your life don't have official proof that you actually have a diagnosed medical condition that demands this rigor, it is very easy to cheat and continue to subject your small bowel lining to the inflammation that will likely cause a number of collateral medical problems down the road.

[Natynat]

Ok, that’s all helpful information. I did get colonoscopy/endoscopy not long ago and nothing was shown there so I’m not worried about that part. Is there medicine/treatment for gluten sensitivities or it’s just a matter of changing the diet?

[trents]

An endoscopy without a biopsy of the small bowel lining would not necessarily be a good diagnostic for celiac disease. If the damage to the small bowel lining is profound enough, and if the scope resolution is good enough, and if the person doing the scoping is experienced enough to recognize "villi blunting" then it can be seen without the aid of a microscope. Otherwise, no.

No medicine for celiac disease or NCGS. The only treatment is complete abstinence from gluten for life. There are a number of drug trials underway that are seeking to come up with an agent that will neutralize consumed gluten in some way or the other to the extent of allowing the exposure to small amounts of it such as you might get accidentally through cross contamination in say, a restaurant when you order gluten free food that is cooked on a grill with gluten containing food.