4 Years and very little progress

[maylynn]

Hello! 

I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat a meal, I get three bites in and feel so full that I feel sick. I can't eat a full meal. Something else has to be wrong right? This can't just be more "normal" right? I have done test after test and no doctor in my area can figure anything else out. They have told me I most likely have shrunken my stomach by now with how little I am eating so that has to do with some of the sick feeling. What have you done to gain the weight back? Foods? Workouts? 

[Scott Adams]

Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests.

Also, have you had various nutrient levels checked via a blood test, and have you been taking vitamin & mineral supplements since your diagnosis? 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.   

Do you still have celiac disease symptoms?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[trents]

Welcome to the  forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done.

As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.

[knitty kitty]

Welcome to the forum, @maylynn,

I had similar symptoms.  I was anemic, lost a lot of weight, felt full after three bites.  I was deficient in vitamins and minerals, especially Thiamine B1.  

Thiamine converts our food to energy so our body can function properly.  While deficient in thiamine, the appetite can disappear (not enough thiamine to digest food) or can become ravenous (the body trying to replete vitamins).  

I lost a lot of weight.  In thiamine insufficiency, the body burns fat and muscle, so weight loss.  It takes less thiamine to burn fat and muscle than it takes to burn carbohydrates.  

Thiamine is needed to make new blood cells.  Thiamine is needed by red blood cells to carry oxygen.  Thiamine helps with fatigue and anemia. 

Malabsorption of Celiac Disease affects all eight water soluble B vitamins, vitamin c, and the four fat soluble vitamins.  Supplementing while healing after diagnosis is beneficial.  Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.

[maylynn]

Thank you so much for the advice, Scott. I am going back to the doctors next week to get more blood work done. The only thing they recommended me to take so far has been two shots of liquid iron in the morning to keep my iron levels high. What supplements or vitamins have worked for you? I never physically feel my celiac symptoms, unless I got cross contamination which I feel has only happened a handful of times in the last four years. When I eat it feels so different than my celiac. Which makes me wonder if it is another food like you suggested. Has anyone ever had issues with meat? I feel like I can snack and snack until it is a full meal, usually including meat. Could that be an allergy or just my gut not digesting well from the celiac? These are all things I am wanting to bring up to my doctor next week but hearing from other people with the same disease beforehand makes me feel less crazy about all of my stomach issues! Thank you again! I will check out the article. 

[maylynn]

19 hours ago, trents said:

Welcome to the  forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done.

As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.

@trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will be bringing that up to my doctor at my apt. next week. Thank you for the suggestions with food. I have tried diary so far. Seems to not be the issue (luckily!). Will have to try the others!

[maylynn]

17 minutes ago, knitty kitty said:

Welcome to the forum, @maylynn,

I had similar symptoms.  I was anemic, lost a lot of weight, felt full after three bites.  I was deficient in vitamins and minerals, especially Thiamine B1.  

Thiamine converts our food to energy so our body can function properly.  While deficient in thiamine, the appetite can disappear (not enough thiamine to digest food) or can become ravenous (the body trying to replete vitamins).  

I lost a lot of weight.  In thiamine insufficiency, the body burns fat and muscle, so weight loss.  It takes less thiamine to burn fat and muscle than it takes to burn carbohydrates.  

Thiamine is needed to make new blood cells.  Thiamine is needed by red blood cells to carry oxygen.  Thiamine helps with fatigue and anemia. 

Malabsorption of Celiac Disease affects all eight water soluble B vitamins, vitamin c, and the four fat soluble vitamins.  Supplementing while healing after diagnosis is beneficial.  Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.

@knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much! 

[knitty kitty]

@maylynn,

No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide). 

My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies.  I studied nutrition before earning a degree in Microbiology because I wanted to know what vitamins were doing inside the body.  My doctors just prescribed pharmaceuticals to cover the symptoms of poor health due to malabsorption of nutrients.

We need more thiamine when we're physically ill, physically active, emotionally stressed and work outside in hot weather.  Thiamine works in concert with the other B vitamins, so all should be supplemented together.  Vitamin D needs to be activated by thiamine.  Vitamin D helps regulate the immune system.  

Don't take Thiamine Mononitrate because it is not bioavailable.  The body has difficulty absorbing and utilizing it.  

Do keep us posted on your progress!

[cristiana]

On 6/10/2025 at 6:09 PM, maylynn said:

Thank you so much for the advice, Scott. I am going back to the doctors next week to get more blood work done. The only thing they recommended me to take so far has been two shots of liquid iron in the morning to keep my iron levels high. What supplements or vitamins have worked for you? I never physically feel my celiac symptoms, unless I got cross contamination which I feel has only happened a handful of times in the last four years. When I eat it feels so different than my celiac. Which makes me wonder if it is another food like you suggested. Has anyone ever had issues with meat? I feel like I can snack and snack until it is a full meal, usually including meat. Could that be an allergy or just my gut not digesting well from the celiac? These are all things I am wanting to bring up to my doctor next week but hearing from other people with the same disease beforehand makes me feel less crazy about all of my stomach issues! Thank you again! I will check out the article. 

Hello there @maylynn 

I'm a slow healer from the UK. 

I sympathise.  Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy.  

For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none).  But I would say even very little iron from an approved source made my stomach sore, I think it can be quite irritating. Perhaps that is an issue for you?

Oats (the gluten-free pure ones) were an issue for many years (now fine).  

Even though my endoscopy findings did not reflect any problems with healing, or any other issues, I self-diagnosed myself with gastritis as it seemed the feeling of nausea and in my case burning in the stomach pointed to it.  I went onto a gastritis/reflux diet and that really helped.   Have a google - there are tonnes online.  That meant avoiding spicy, greasy food, onions, tomatoes, coffee and alcohol.  (Actually, I don't drink, but I did toast someone during that time at a baptism and it set my stomach on fire.)   Instead of drinking strong coffee, I drank water, camomile tea, warm ginger water... so soothing. 

I would not go to bed with a full stomach when things were bad, I would let my stomach rest from say 8pm to 8am, which really helped.  

My husband and I then decided to buy a new oven and to buy a new dishwasher - we did need new ones anyway.  The new oven had two compartments, gluten goes in one, gluten free in the other.  The new dishwasher was a Miele which does a full rinse with clean water before washing the dishes.  But before I could afford a new dishwasher I would hand wash the dishes and make sure they were really rinsed well, no residue  (unlike our old dishwasher that was really not rinsing well at all).

I stopped eating out for quite a few years - I think this is a biggy - although I would have coffee and soft drinks out.

Eventually, my levels normalised.  What of the above was the 'silver bullet'?  I am not sure, but finally I did feel a lot better.  Occasionally I will take an over the counter PPI (omeprazole) or a small dose of Gaviscon, but most of the time I don't need them now.

I'm not expecting anyone to go to all these lengths, but it could be that one or two of the tips I give you might work.  Don't give up hope!

Cristiana

Edited June 11 by cristiana