Symptoms and trying to figure this out

[KCGirly]

Back in September I started Semaglutide for weight loss. Shortly after starting I started having stomach issues - vomiting, diarrhea, red itchy palms and elevated heart rate.  I would have The episodes were every two weeks or so.  I stopped taking the semaglutide, but continued to have episodes.  GP ran bloodwork all normal, including celiac.  Ordered a stomach emptying test it was normal too.  The itchy palms stumped him.  So he ordered blood allergy test all came back normal no allergies. He had me go gluten free 11/29.  Finally got into a GI doc on 12/16.  She wanted me to reintroduce gluten back in my diet on 12/23 and then have scope on 1/8.  Well, 5 days in with gluten, I had an episode. I’m not sure I can keep eating gluten for 10 more days.  I have PTSD thinking about possibly having an episode(s) again.  Anyone going through this? Or have thoughts/suggestions?

[trents]

Welcome to the forum, @KCGirly!

From Wikipedia on Semaglutide: "The most common side effects include nausea, vomiting, diarrhea, abdominal pain, and constipation."

How much gluten are you consuming daily? Recently revised recommendations are for the daily ingestion of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at least 2 weeks prior to celiac disease testing, either via blood antibody tests or endoscopy/biopsy in order to ensure valid test results. Your GI doc's instructions barely fit into that time window. I hope it is sufficient to yield valid biopsy results.

About your episode(s) after reintroducing gluten on 12/23 after starting a gluten free diet on 11/29. You stated at the outset of your narrative that historically these episodes occurred about every two weeks and that was before you trialed the gluten free diet. I would point out that you had only been eating gluten free for three weeks before the episode on 12/23. So, I'm not sure you can attribute that episode to the return to gluten consumption. 

In addition to celiac disease, there is another gluten-related health issue known as NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

Also, can you specify which test or tests for celiac disease were ordered by your GP? There are a number of serum antibody tests that can be run in order to detect celiac disease but many physicians will order the minimum instead of a more extensive panel. What one test misses, another may catch.

Edited December 30, 2024 by trents

[KCGirly]

Thanks for the reply Trent.  You asked how much gluten I’m consuming daily.  I haven’t been tracking that.  I just know that some of the food I’ve been eating does have gluten like sandwiches and things like that.  I’ve also had a few cookies we baked that had flour. 

 

My GI doctor did get back with me and they are moving the endoscopy up to tomorrow.  I too hope I have consumed enough gluten for the test to be accurate. 
 

The odd thing about this is about 12-14 years ago I had similar symptoms.  The ended up diagnosing as IBS.  They never did celiac testing.  The episodes went away and just reared their ugly head again this year. I’m not sure why they just stopped, but was thankful. 

 Here are the results for the blood test.

CELIAC DISEASE COMPREHENSIVE PANEL

INTERPRETATION

No serological evidence of celiac disease.

tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease. Celiac disease is extremely rare in the absence of DQ2 or DQ8. Show Less

TISSUE TRANSGLUTAMINASE AB, IGA

U/mL

<1.0

IMMUNOGLOBULIN A

230

[knitty kitty]

Welcome to the forum, @KCGirly,

In addition to side effects like rashes and gastrointestinal symptoms, Semaglutide is known to cause Thiamine Vitamin B1 deficiency.   Gastrointestinal Beriberi (a Thiamine deficiency disorder) causes nausea, vomiting, abdominal pain, diarrhea, constipation, and tachycardia.  

Consuming a diet high in carbohydrates (like during a gluten challenge) can make symptoms worse.  Thiamine is needed to convert carbs, fats, and proteins into energy and enzymes that keep us alive.  Without sufficient thiamine, our bodies store excess calories as fat.

Symptoms of thiamine deficiency can wax and wane depending on how much dietary thiamine is consumed.  If you eat a meal with lots of thiamine (meat and liver are good sources of dietary thiamine),  a twenty percent increase in dietary thiamine produces an eighty percent increase in brain activity and symptoms improve.  Symptoms can occur for years with subclinical thiamine deficiency.

A doctor can administer high dose thiamine intravenously, or over-the-counter thiamine supplements (Benfotiamine) can be taken.  Symptoms improve within a few hours to days with thiamine supplementation.  Thiamine is safe and nontoxic even in high doses.  No harm in trying thiamine supplementation, if only to rule it out.  Unfortunately, many doctors are not aware of thiamine deficiency caused by pharmaceuticals.  

Thiamine deficiency can affect antibody production and results in false negatives on Celiac testing.

Semaglutide can also cause Vitamin B12 deficiency and folate deficiency.  Anesthesia can also deplete B12.

Do keep us posted on your progress.

Edited December 30, 2024 by knitty kitty
Typo correction

[trents]

Well, I strongly disagree that it was a comprehensive celiac disease panel. In addition to the tTG-IGA and the Immunoglobulin A, a comprehensive celiac panel would have included DGP-IGA, DGP-IGG and TTG-IGG. What he ordered was the most popular celiac antibody test available (and perhaps the best one), the tTG-IGA and he also, to his credit, ordered the Immunoglobulin A (aka, "total IGA"). The total IGA test is not a celiac antibody test per se but is used to check for IGA deficiency. IGA deficiency can distort IGA test results for individual IGA test scores downward and create false negatives. You are not IGA deficient so that is not a problem in your case.

Here is an article giving an overview of celiac antibody testing: 

 

Edited December 30, 2024 by trents

[Wheatwacked]

Also ask for a test of vitamin D levels.

I agree with knitty kitty that cyclical Thiamine deficiency may be the cause of your cycle.  Celiac Disease causes multiple vitamin and mineral deficiencies.

 

On 12/30/2024 at 12:24 PM, KCGirly said:

 The itchy palms stumped him.

Itchy palms can be a symptom of iodine deficiency.  Low iodine levels can lead to dry, flaky skin on the hands and  body due to the disruption of normal skin cell regeneration caused by a lack of thyroid hormone production, which relies on iodine. Other symptoms are   fatigue, weight gain, sensitivity to cold.

I take between 600 and 1200 mcg a day Liquid Iodine. It has improved my healing.  Strong Iodine and Lugols Solution are other options.  Start low and build up over time.

Quote

 

According to John J. Zone, MD, Professor and Dermatology Chair at the University of Utah and CDF Medical Advisory Board member, “There is little question that ingestion of large amounts of iodine dramatically worsens dermatitis herpetiformis. According to Dr. Zone, a low-iodine diet is not recommended for patients with dermatitis herpetiformis, as small amounts of iodine found in vitamin pills and most foods are not a problem. Additionally, inadequate iodine intake can cause health problems like goiter and hypothyroidism.   https://celiac.org/2015/10/23/dermatitis-herpetiformis-and-iodine-exposure/

Between 1970 and 1988 the dietary intake of Americans dropped by 50%.

Quote

In 1980, iodine was removed from bread and was replaced by bromide. This was highly unfortunate, as bromide is toxic. It purges iodine from your body. Bromide is found in bread, Gatorade, swimming pools, fire retardant, carpets, furniture, nail polish, and make-up, to name a few items you’re in contact with on a daily basis.  https://regenerativemc.com/where-did-all-the-iodine-go/#:~:text=In the 1960's%2C iodine was,on any credible scientific evidence.

Perhaps this is why some can tolerate the bread in Europe?