Loss of appetite on a gluten free diet

[sabahdada]

Hi, I have been following a gluten free diet for about 4 months now but I've completely lost my appetite, just eating a little gets me very full and bloated quite quickly. I've had multiple blood tests done but they have all come back normal. It's come to a point where I have to force myself to eat even though it makes me uncomfortable. Just really need some advice, I'm fed up of feeling like this.

[trents]

Are you still consuming oats and dairy?

[sabahdada]

Yes I am.

[sabahdada]

8 minutes ago, trents said:

Are you still consuming oats and dairy?

Yes I am.

[trents]

Celiacs sometimes react to oat protein and the dairy protein casein like they do gluten, especially until there is substantial healing of the small bowel villi. You might try eliminating these two things from your diet for a few weeks and see if there is improvement.

It is common for celiacs to develop other, non-gluten, food intolerances because of the "leaky gut" syndrome caused by the damaged small bowel lining. Intolerances can be to any food but dairy, oats and egg intolerances are the most common. Larger than normal protein fractions slip past the gut lining and get into the blood stream where they are interpreted as harmful invaders. After the gut lining has healed, which can often take up to two years, many find they can go back to eating some of these things again without issue. It might be a good idea to keep a food diary to see if there are patterns between what you eat and your symptoms. You may have developed lactose (milk sugar) intolerance as well, another common spinoff of celiac disease.

You might also consider being evaluated for SIBO (Small Bowel Bacterial Overgrowth).

Edited December 22, 2021 by trents

[jc94jc94]

Get the doctor to check thiamine (b1). If you're eating allot of gluten-free bread, rice, pastas etc - you will be consuming your body's stores of thiamine but these foods are not fortified like the wheat versions are. So you will become deficient over time if you're not consciously choosing things that are rich in b1 in your diet like fresh pork products, rice bran, flaxseed, fresh oranges and peas.

[Kate333]

You said all your blood tests were all normal.  Does this include the TTG/IGA gluten antibody blood test?  If you haven't gotten it, your doctor should order it.   If it's normal (lucky you!), it's highly unlikely that you have Celiac Disease. 

You could be non-celiac disease gluten sensitive but there is no blood test for that and many GI docs don't even recognize it as a real medical condition (yet).  Also, if you don't feel even a little bit better after 4 months of gluten-free diet, there is probably no medical reason for you to avoid gluten and you/your doctors should investigate/consider other possible factors (as Trents noted, other food intolerances like dairy, or chronic, severe stress which can really do a big number on the gut).  

I hope you feel better soon!!

[Wheatwacked]

You are four months into a change you should follow forever. There will be plateaus and roadblocks. Pay attention to your vitamin and mineral intake, the blood tests for many only show current plasma status, not cellular reserves. Most Americans eat less than the recommended amounts of Potassium and Choline. It helps to write down what you eat. I have two sheets of shushi nori with my morning coffee. Choose a brand that is certified organic to avoid heavy metal contamination. Most important, eat what you can.

[Yvonne Casey]

On 12/22/2021 at 10:44 AM, sabahdada said:

Hi, I have been following a gluten free diet for about 4 months now but I've completely lost my appetite, just eating a little gets me very full and bloated quite quickly. I've had multiple blood tests done but they have all come back normal. It's come to a point where I have to force myself to eat even though it makes me uncomfortable. Just really need some advice, I'm fed up of feeling like this.

I’m 64, have suffered with similar symptoms along with vomiting and diarrhea for years… had blood test done and it came back negative for Celiacs; I was just diagnosed in August of this year after going to a new Gastroenterologist that asked many questions that my previous doc never took the time to ask; he had a plan to do three different things and the first was an EGD…where he took biopsies, which came back without a doubt positive.  I’m giving way more information that I should, but my point is please keep searching for a doctor that will do further testing to figure out what’s wrong and it may take a while for your intestines to calm down.  If Celiacs is what you have it must be totally gluten free…no cross-contamination.   Good luck.  I totally understand how you feel; from someone that went from “live to eat” to “eat to live”.