Appetite went from 100 to 0... what gives?

[celioops]

Hi all.

Newbie here who was recently diagnosed with Celiac from blood testing (TTG >250 and DGP >200). While waiting for an endoscopy, I've been eating one piece of bread in the evening to keep my gluten intake in check and eat completely gluten free otherwise. I used to have an insatiable appetite (CONSTANTLY snacking and thinking about food) before diagnosis and it's dropped to NOTHING. Nothing! 

Food has become actively repulsive to me. I've never, ever felt like this. I do notice a lot of gastrointestinal symptoms after eating gluten that I probably mistook as hunger for years (stomach turning over, uncomfortable abdomen, digestive noises) but surely I should have some natural hunger cues! I don't get hunger pangs or cravings anymore and have become very picky. 

Is this something to tell my gastroenterologist about? Has anyone struggled with similar issues or understand why this is happening? It's a relief to be freed of cravings, but this has really caught me off guard, especially since I am not yet completely gluten free.

[trents]

The Mayo Clinic recommendation for the endoscopy pretest gluten challenge is daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks. You might want to increase your consumption amount. When is your endoscopy?

[celioops]

14 minutes ago, trents said:

The Mayo Clinic recommendation for the endoscopy pretest gluten challenge is daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks. You might want to increase your consumption amount. When is your endoscopy?

Increasing bread consumption is a good idea. My PCP said I could decrease gluten, but it's probably best to stick with the industry standard. My endoscopy is in a month.

[trents]

1 minute ago, celioops said:

Increasing bread consumption is a good idea. My PCP said I could decrease gluten, but it's probably best to stick with the industry standard. My endoscopy is in a month.

Think about it. The purpose of the endoscopy/biopsy is to look for damage to the villi that line the small bowel. If you cut back on gluten consumption and allow healing to take place you may compromise the test results.

[Scott Adams]

What are the reference ranges on your high test results? If you are over 10 times the cut off for celiac disease on either test, at least in Europe, they do not require an endoscopy to confirm celiac disease. You might want to at least mention this to your doctor because it sounds like you may be 10 times over on both of your tests.

[celioops]

1 hour ago, Scott Adams said:

What are the reference ranges on your high test results? If you are over 10 times the cut off for celiac disease on either test, at least in Europe, they do not require an endoscopy to confirm celiac disease. You might want to at least mention this to your doctor because it sounds like you may be 10 times over on both of your tests.

Hi Scott, 

The reference ranges on both tests were <=14.9 U/mL. I'm easily above 10x the cutoff on both tests, but am in the United States. Thank you for adding this to the conversation! I didn't know that 10x the cutoff was okayed for diagnostic purposes in Europe. I'll mention this to my doctor and let the forum know what he says. 

[Scott Adams]

Here is the reference article:

 

[KHL]

I've experienced the same thing celioops! I've been totally gluten free for 1.5 years and it was this Halloween I realized I had lost my sweet tooth, and frankly my appetite in general. I feel great and eat a healthy diet, so in my case I wouldn't consider it a bad thing, but as a lifelong chocolate fanatic I can't believe it. 

I had wondered if it was because of nerves around eating unknown foods, but you make a good point about potentially misreading body cues when I was eating gluten. 

[celioops]

1 hour ago, KHL said:

I've experienced the same thing celioops! I've been totally gluten free for 1.5 years and it was this Halloween I realized I had lost my sweet tooth, and frankly my appetite in general. I feel great and eat a healthy diet, so in my case I wouldn't consider it a bad thing, but as a lifelong chocolate fanatic I can't believe it. 

I had wondered if it was because of nerves around eating unknown foods, but you make a good point about potentially misreading body cues when I was eating gluten. 

I relate so strongly to what you said, KHL! Being able to leave chocolate untouched is very new for me. I always had to put a lot of effort into avoiding sweets because I craved them like crazy. This morning, even greek yogurt felt unappetizingly sweet. I opened one up and left it half-eaten. Surreal!

 

On 12/2/2021 at 2:51 PM, trents said:

The Mayo Clinic recommendation for the endoscopy pretest gluten challenge is daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks. You might want to increase your consumption amount. When is your endoscopy?

To trents and for the reference of any others who may benefit from this thread: I ate a large amount of gluten tonight (sandwich from a restaurant) and have become *significantly* snacky after days of negligible appetite. Thank you for the suggestion to double my consumption, trents. I'm noticing an uncomfortable (almost swollen, tingly, raw, or dry) mouthfeel after eating gluten. I suspect I was snacking (while unaware of my celiac status) to satiate that mouthfeel. 

[rock503]

On 12/2/2021 at 2:47 PM, celioops said:

Hi all.

Newbie here who was recently diagnosed with Celiac from blood testing (TTG >250 and DGP >200). While waiting for an endoscopy, I've been eating one piece of bread in the evening to keep my gluten intake in check and eat completely gluten free otherwise. I used to have an insatiable appetite (CONSTANTLY snacking and thinking about food) before diagnosis and it's dropped to NOTHING. Nothing! 

Food has become actively repulsive to me. I've never, ever felt like this. I do notice a lot of gastrointestinal symptoms after eating gluten that I probably mistook as hunger for years (stomach turning over, uncomfortable abdomen, digestive noises) but surely I should have some natural hunger cues! I don't get hunger pangs or cravings anymore and have become very picky. 

Is this something to tell my gastroenterologist about? Has anyone struggled with similar issues or understand why this is happening? It's a relief to be freed of cravings, but this has really caught me off guard, especially since I am not yet completely gluten free.

My 17 yo daughter was diagnosed 10 months ago and her TTG is >250. She was losing weight beforehand. After diagnosis she was gagging and vomiting with eat for at least three months. Yes picky and developed an eating disorder. Slowly recovering. We are waiting for a new TTG at the year anniversary and hope to see something under 250. 

[Scott Adams]

I wonder how many people with eating disorders have undiagnosed celiac disease or other food intolernaces? It would make an interesting study. My guess is that the rate of celiac disease among those with eating disorders is measurably greater than in the non-celiac population. 

[Wheatwacked]

On 12/4/2021 at 1:31 AM, celioops said:

have become *significantly* snacky after days of negligible appetite.

And there is the addiction in action.  not eating enought gluten caused a withdrawal symptom of anorexia, return to gluten the cravings return.  It was either Dr Fuhman or Dr Davis that referred to this hunger as Toxic Hunger.