After 18 months still pregnant-looking

[chocoholic]

Hi all, I was diagnosed with celiac disease 1.5 years ago and went gluten free on the day of the diagnosis.

I feel that I've been coping really well with the diet and lifestyle. I never eat out, or any food cooked by someone but me. I never eat anything manufactured in gluten facilities. I'm pretty informed about the subject.

My most recent followup ttg-antibody testing revealed a low count well within the "negative" range. So based on this, everything should be in order.

However, I'm convinced that there are still issues going on in my intestine. And I'm not talking about IBS or Crohn's.

While my diarrhea & borborigmi had stopped immediately when going gluten-free and my periods changed a lot, my abdominal distension took a different progression. For years I had chronically looked 6 months pregnant. During the 3 days of preparing for the endoscopy (I also had a colonoscopy at the same time), I consumed the prescribed laxative salt-solution, and my chosen 'meals' of pureed plum compote & wheat semolina (I was supposed to only eat things without seeds or bits that could get caught in the intestine). On this diet, my abdomen deflated to an unbelievable extent. I hadn't had such a flat stomach in years. After the procedure, I continued to eat gluten until the diagnosis a week later. By then, my circumference had started increasing again. I didn't keep a journal with measurements, but I know that within a few weeks at the latest, my belly looked *almost* as big as before going gluten free. And it hasn't changed since. Now I 'only' look 4 months pregnant. 😆😱

I have noticed that on the very rare occasion when I eat lactose-containing foods, I get diarrhea, sometimes violently so. I know this is a common issue for newly diagnosed celiacs, but shouldn't my villi have healed after 1.5 years of a conscientious gluten-free diet with no realistic source of contamination?

Second, I suspect a fructose absorption issue, which I find endlessly more difficult to investigate at home than a lactose intolerance.

I booked an appointment with my GP for next week, but I expect her to refuse to do lactose or fructose testing, maybe sending me away. So I'm asking you guys if I'm missing something.

Why would my abdomen deflate for 3 days on a plum & wheat diet if I have an issue with fructose and gluten?

I had asked my gastroenterologist whether he or the lab had checked for intestinal fungus, but he said no, he didn't see the point (!?). Do you see fungus as a possible cause?

[trents]

My take on that would be that the laxative salt solution prep caused things to move through so fast that the wheat semolina didn't have time to cause much inflammation.

[chocoholic]

Hi Trents, thanks for your take on this.

Interesting thought. You think inflammation caused by longterm gluten consumption decreases so rapidly? And if so, how does this go with the lactose intolerance that I seem to be having? If the villi are still damaged, wouldn't this mean they are also still inflamed?

[chocoholic]

And since I've been gluten free for so long, there shouldn't be any inflammation anyway, I guess..

[trents]

Sorry, I misunderstood what you were intending to say. I interpreted your "wheat semolina" consumption to be something you did only that one time in conjunction with taking the clean out laxative.

[charks]

Hi there

I too looked six months pregnant. But within 3 days of giving up gluten I had a flat stomach. It was like a miracle. But I wasn't totally gluten free, I was still eating small amounts of gluten in processed foods and still getting neurological problems.  

Ever since I can remember having a problem with a bloated stomach. I thought I had weak stomach muscles. My mother had the same problem. When I was young I was very vain. When I went clubbing I wouldn't eat all day to make sure I had a flat stomach so I could wear my skimpy clothes. I could never understand why going for a meal was considered romantic. I had to wear an 'eating' dress to hide the bulge - and there was no way I would ever have got undressed in front of of any man I was interested in after eating. My sex life has always been 'hanky panky' first  - then food.   

Anyway I'm getting away from the point. I could look six months pregnant at night but after a night's sleep my stomach would look flat and stay flat until I ate. And now my stomach is flat all the time. Unless I get 'glutened'. But I have also given up sugar. I don't eat cakes and sweets. When you eat sugar you're fueling the bacteria in your gut and they produce gas which leads to bloating.  I don't eat gluten free products because they contain so much sugar. And they also contain masses of fat which can also cause bloating. 

Why not have  24 hour fast to reset your digestive system and then eat plain, home cooked foods for a couple of days, avoiding sugar/fructose. That way you can test out your theory of a fructose absorption issue. 

 

[Scott Adams]

Healing can take an average of 2 years, but if you are eating out regularly you could be getting gluten contamination, however, it sounds like you're pretty strict. Not everyone recovers from casein intolerance, so that could be another lifelong intolerance that could be causing your boating, but many celiacs do recover from that. Reducing your refined carbohydrates and cutting out sugar can help eliminate possible SIBO as well. You may need to do some more work eliminating foods from your diet for a few weeks, and keeping a food diary when you add them back. Some people have nightshade issues, or issues with chicken eggs, corn, soy, etc.

[knitty kitty]

Oy!  The colonoscopy prep will wash out some of the bacteria in your intestines. So you went from looking six months gone to only four.  

Small Intestinal Bacterial Overgrowth (SIBO) is often associated with bloating.  It's more likely your intestinal bacteria are partying and raising a ruckus when you consume fructose and sucrose than you having a fructose intolerance.  

The Autoimmune Paleo Diet will starve out these undesirable bacteria, allowing more beneficial bacteria to repopulate your intestines.

Probably not a fungus.  Candida albicans is a yeast overgrowth that can occur, but since you don't mention having UTI's, probably not that either.  Anyway, the AIP diet will help get rid of those, too.  

The AIP diet is wonderful at reducing inflammation and that bloat and encouraging good bacteria.

"Persisting changes of intestinal microbiota after bowel lavage and colonoscopy"

https://pubmed.ncbi.nlm.nih.gov/27015015/

 

[Scott Adams]

Can you describe the main differences between the Autoimmune Paleo Diet and just a paleo diet? 

[charks]

Hi there

After thinking more about the subject I realized that I also get some bloating when I eat something with sugar it. So I experimented on myself. Not good for my blood sugar but hey it's only the once. And the result is - yes, I get bloated when I eat sugar. And flatulance as well. I don't eat sugar because I'm a diabetic (in remission) and because there is so much research linking sugar with cancer and dementia. And now I have yet another reason. My poor partner has had to give up bread and pasta, eating out and beer. Me farting like a trooper would be like the straw that broke the camel's back. Before I went gluten free I used to fart all the time in bed. They weren't loud, he used to say I sounded like a babbling brook.   

[Scott Adams]

There are some great gluten-free pastas out there, for example Barilla and Schar make good ones that you probably could not tell were gluten-free, but are probably no low carb. There are also high protein pastas and breads, for example I've see soy-based ones that are ok. 

[knitty kitty]

7 hours ago, Scott Adams said:

Can you describe the main differences between the Autoimmune Paleo Diet and just a paleo diet? 

The Autoimmune Paleo Diet is stricter than the Paleo diet.  

I look at the difference between the Autoimmune Paleo Diet and a Paleo diet similar to the difference between a Gluten Free diet for Celiacs and the fashion trend of a gluten free diet.  

Just like some people adopt a gluten free diet because they want to drop a few pounds or their friends are all doing it, some people adopt a Paleo diet for similar reasons.  

The Gluten Free diet for Celiac Disease is a medical necessity. It's the method of treatment for this disease.  It's serious business to avoid every crumb of gluten.

To me, the Autoimmune Paleo Diet is also a medical treatment.  There are many studies that show how effective the Autoimmune Paleo Diet is at reducing inflammation of a variety of autoimmune diseases, many of which can occur concurrently with Celiac Disease.  It's serious business avoiding inflammatory foods.

We've had posters that started with one autoimmune disease and started accruing additional autoimmune diseases over time.  It's dreadful to experience a cascade of health problems.  I know.  

Just like we have to avoid gluten to avoid the inflammation process, we need to avoid other inflammatory food sources.  

The Autoimmune Paleo Diet, in all its strictness, is meant to reduce inflammation, which it does within weeks.  Adding additional foods, expanding your food repertoire, is important after the inflammation resolves because the Autoimmune Paleo diet can be deficient in some nutrients over a long period, but nutritional deficiencies are also found in people on the gluten free diet.  

I'm a big believer in giving the body the vitamins and minerals it needs and the body will heal itself.  I spent many wasted years suffering with declining health while my doctors just kept throwing pharmaceuticals designed to ameliorate the symptoms, but not resolve the real problem underneath.  The real problem was malnutrition from malabsorption caused by Celiac Disease.  

 I found this article that explains it better than I....

"The Autoimmune Protocol Diet (AIP Diet) : Does it help?"

https://theceliacmd.com/the-autoimmune-protocol-diet/

Hope this helps!

 

[Zladyboss]

Wow this is like reading about myself, diagnosis for me is not confirmed but everything you have said is me to a T, I don’t eat all day before nights out, meals out is my idea of hell, and holidays abroad well i barely eat! in the last couple of years I no longer wake with a flat stomach seems to take longer to go down now and I don’t eat all day so my work mates don’t think I’m pregnant. I’m a very fussy eater as it is so any help advice on wants good to eat and what to avoid would be greatly received. 

[trents]

42 minutes ago, Zladyboss said:

Wow this is like reading about myself, diagnosis for me is not confirmed but everything you have said is me to a T, I don’t eat all day before nights out, meals out is my idea of hell, and holidays abroad well i barely eat! in the last couple of years I no longer wake with a flat stomach seems to take longer to go down now and I don’t eat all day so my work mates don’t think I’m pregnant. I’m a very fussy eater as it is so any help advice on wants good to eat and what to avoid would be greatly received. 

So you have been tested for celiac disease and waiting for results?

[Zladyboss]

Yes I am waiting. I seem to have the very itchy rash associated with celiac as well as lovely bloated stomach 

[Scott Adams]

Welcome to the forum @Zladyboss! 

I hope some of the info you find here will help!

[charks]

22 hours ago, Zladyboss said:

Wow this is like reading about myself, diagnosis for me is not confirmed but everything you have said is me to a T, I don’t eat all day before nights out, meals out is my idea of hell, and holidays abroad well i barely eat! in the last couple of years I no longer wake with a flat stomach seems to take longer to go down now and I don’t eat all day so my work mates don’t think I’m pregnant. I’m a very fussy eater as it is so any help advice on wants good to eat and what to avoid would be greatly received. 

The funny thing is I put up with my bloating stomach for over 40 years and never once thought that there was anything wrong with me. I thought people with flat stomachs just had 6 packs. It was such a relief to find out it was caused by gluten and that it vanished once I went gluten free. I took advice from this forum and also went dairy free, processed food and sugar free. I now eat a lot of nuts and plain food.  Lamb stew and mashed potatoes is my go to. It can get boring but it's worth it to have a flat stomach!!!  

[Zladyboss]

15 hours ago, Scott Adams said:

Welcome to the forum @Zladyboss! 

I hope some of the info you find here will help!

Thank you 

 

16 minutes ago, charks said:

The funny thing is I put up with my bloating stomach for over 40 years and never once thought that there was anything wrong with me. I thought people with flat stomachs just had 6 packs. It was such a relief to find out it was caused by gluten and that it vanished once I went gluten free. I took advice from this forum and also went dairy free, processed food and sugar free. I now eat a lot of nuts and plain food.  Lamb stew and mashed potatoes is my go to. It can get boring but it's worth it to have a flat stomach!!!  

I’m 42 and I’ve always known it’s not normal the way i bloated after any food, I’ve heard it all from doctors eat slowly, less salt, IBS 
i am hoping I have the results you have it will be nice to get up and get dressed and wear whatever I like without planning around the Bloat or wearing the loose fit baggy clothes. 
i welcome all food suggestion and meal ideas being i creditable fussy is going to make this harder but be nice to eat before a night or day out and not look like I’m 6 months pregnant 

[chocoholic]

On 3/4/2021 at 5:56 PM, charks said:

Hi there

I too looked six months pregnant. But within 3 days of giving up gluten I had a flat stomach. It was like a miracle. But I wasn't totally gluten free, I was still eating small amounts of gluten in processed foods and still getting neurological problems.  

Ever since I can remember having a problem with a bloated stomach. I thought I had weak stomach muscles. My mother had the same problem. When I was young I was very vain. When I went clubbing I wouldn't eat all day to make sure I had a flat stomach so I could wear my skimpy clothes. I could never understand why going for a meal was considered romantic. I had to wear an 'eating' dress to hide the bulge - and there was no way I would ever have got undressed in front of of any man I was interested in after eating. My sex life has always been 'hanky panky' first  - then food.   

Anyway I'm getting away from the point. I could look six months pregnant at night but after a night's sleep my stomach would look flat and stay flat until I ate. And now my stomach is flat all the time. Unless I get 'glutened'. But I have also given up sugar. I don't eat cakes and sweets. When you eat sugar you're fueling the bacteria in your gut and they produce gas which leads to bloating.  I don't eat gluten free products because they contain so much sugar. And they also contain masses of fat which can also cause bloating. 

Why not have  24 hour fast to reset your digestive system and then eat plain, home cooked foods for a couple of days, avoiding sugar/fructose. That way you can test out your theory of a fructose absorption issue. 

 

Thanks for your reply Charks, I can relate how you used to feel. I'm considering the 24-hr fast thing, although I dread the blood sugar issues, cravings, and hunger! Especially since I can't sleep hungry! 😨

On 3/5/2021 at 12:31 AM, Scott Adams said:

Healing can take an average of 2 years, but if you are eating out regularly you could be getting gluten contamination, however, it sounds like you're pretty strict. Not everyone recovers from casein intolerance, so that could be another lifelong intolerance that could be causing your boating, but many celiacs do recover from that. Reducing your refined carbohydrates and cutting out sugar can help eliminate possible SIBO as well. You may need to do some more work eliminating foods from your diet for a few weeks, and keeping a food diary when you add them back. Some people have nightshade issues, or issues with chicken eggs, corn, soy, etc.

Thanks for sharing your thoughts, Scott, you're so right about the food diary, I've been postponing this for years, long before celiac...

[chocoholic]

On 3/5/2021 at 5:15 AM, knitty kitty said:

Oy!  The colonoscopy prep will wash out some of the bacteria in your intestines. So you went from looking six months gone to only four.  

Small Intestinal Bacterial Overgrowth (SIBO) is often associated with bloating.  It's more likely your intestinal bacteria are partying and raising a ruckus when you consume fructose and sucrose than you having a fructose intolerance.  

The Autoimmune Paleo Diet will starve out these undesirable bacteria, allowing more beneficial bacteria to repopulate your intestines.

Probably not a fungus.  Candida albicans is a yeast overgrowth that can occur, but since you don't mention having UTI's, probably not that either.  Anyway, the AIP diet will help get rid of those, too.  

The AIP diet is wonderful at reducing inflammation and that bloat and encouraging good bacteria.

"Persisting changes of intestinal microbiota after bowel lavage and colonoscopy"

https://pubmed.ncbi.nlm.nih.gov/27015015/

 

Thank you, Knitty Kitty, yes...SIBO...I read about this here in the forum when I was diagnosed with celiac but kept living in a state of denial that this would really concern me. And paleo....that's really tough for me because ideally I like being vegan, but have switched to ovo-lacto-veg a few years ago, which is the most I want to consume animal-wise. I don't think I can ever become a meat eater.

[chocoholic]

On 3/6/2021 at 8:26 PM, Zladyboss said:

Yes I am waiting. I seem to have the very itchy rash associated with celiac as well as lovely bloated stomach 

My skin has been very problematic for the past 5+ years. Extremely dry and itchy to various degrees. Today I was at a specialist to check my ears for an infection because they get (one more than the other) insanely itchy every day. He said there definitely is no infection or other abnormality; they are just very dry inside.

The skin of body parts/areas is also affected, and my scalp being highly problematic without a known infection (a derm tested me). But the symptoms don't match the photos online of D. Herpetiformis. So I'm guessing that no doctor would say my skin issues are linked to my celiac.

I also have "hay fever" / pollen allergies quite severe starting each February.

Overall, my immune system seems to be constantly busy for different reasons.