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

celioops
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celioops Rookie
celioops
Posted

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.

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trents Grand Master
trents
Posted

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 Rookie
celioops
Posted
  • Author
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 Grand Master
trents
Posted
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 Grand Master
Scott Adams
Posted

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 Rookie
celioops
Posted
  • Author
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 Grand Master
Scott Adams
Posted

Here is the reference article:

 

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KHL Rookie
KHL
Posted

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 Rookie
celioops
Posted
  • Author
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 Newbie
rock503
Posted
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 Grand Master
Scott Adams
Posted

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 Veteran
Wheatwacked
Posted
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. 

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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