Celiac & food intolerances

[Sharib]

I was diagnosed Celiac via biopsies of my small intestine in June 2021.  It was highly suspected from biopsies done in October 2020.  I was gluten free at the start of 2020 and consumed gluten daily for 2 months prior to my scopes.  I didn’t have nausea, vomiting and episodes of diarrhea while eating gluten.  Maybe some more minor loose stool, but nothing like my liquid stool that was in the recent past.

In 2020 I noticed I didn’t tolerate eggs & nut butters.  I would have nausea & upset stomach.  Later the diarrhea would ensue.  

Last year & this year I had about 3 or 4 episodes of nausea, vomiting and diarrhea after eating at a restaurant two different times and at home.  I made 2 home cooked scallops to test out & the N, V & D ensued about 4 hours later.  Last week I reintroduced one scrambled egg.  About 3 1/2 hrs later I was nauseated and the loose stool at 2am, 7am and one or two more & then I was done.  
 

My diet consists of jasmine or white rice, chicken breast & thighs, various veggies.  Breakfast is cream of rice, coconut milk mixed with water, blueberries, MCT oil & Great Lakes collagen. Coconut milk is 2 ingredients-coconut and water.  I eat mostly organic.  
 

I recently treated SIBO with supplements.  Im treating H pylori with supplements now and it will be completed at the end of December.  I’m sure I have leaky gut.  I have malabsorption from Celiac based on my labs.  It seems my food intolerances are due to all of these things.  I have worked with a Functional doctor.  Currently I work with two dieticians and one has Celiac.  She also had H pylori and food intolerances.  I’m wondering who else has food intolerances or any of my other issues.  What has helped heal your gut/small intestine to alleviate food intolerances?  Any insights are appreciated.

Hope this wasn’t too long.

Thanks!

Shari

[fergusminto]

Diagnosed Coeliac in 2008. Since then my food intolerences have expanded somewhat which has heavily restricted my lifestyle. Can only go to trusted restaurants and cannot drink alcohol. My intolerences include all dairy (cassein), eggs (Albumen), oats, soya, rapeseed, sulphites, sulphates, phosphates (all chemical preservatives) and various perfumes/cosmetic fragrances esp those that include alcohols. Can't abide heavily perfumed detergents or softeners. Plus various other delicacies such as chocolate!!! Consumption of any of these will trigger a headache and tiredness, usually starting at 2.30am in the morning so I generally wake up with a headache 2 to 3 times a week, headaches which are not affected by ibuprofen. Whereas it is relatively easy to avoid the foods, it is not easy to avoid fragrancies and cosmetics. For instance, I have just had to start avoiding certain toothpastes and alcohol-based mouthwashes. Isolating these non food items is not easy and to be quite honest I am getting quite fed up as nobody will tell me (or knows) why this is happening, what is causing it and what can be done about it. I am in the UK and it appears that most research is undertaken in the US and not many UK doctors will recognise such research. I often feel I know more about Coeliac than they do and have fired one doctor for that reason!

I sympathise with you and just wish someone would research these intolerences which I fully believe are caused by celiac disease - but few in the UK will acknowledge that.

[Sharib]

12 hours ago, fergusminto said:

Diagnosed Coeliac in 2008. Since then my food intolerences have expanded somewhat which has heavily restricted my lifestyle. Can only go to trusted restaurants and cannot drink alcohol. My intolerences include all dairy (cassein), eggs (Albumen), oats, soya, rapeseed, sulphites, sulphates, phosphates (all chemical preservatives) and various perfumes/cosmetic fragrances esp those that include alcohols. Can't abide heavily perfumed detergents or softeners. Plus various other delicacies such as chocolate!!! Consumption of any of these will trigger a headache and tiredness, usually starting at 2.30am in the morning so I generally wake up with a headache 2 to 3 times a week, headaches which are not affected by ibuprofen. Whereas it is relatively easy to avoid the foods, it is not easy to avoid fragrancies and cosmetics. For instance, I have just had to start avoiding certain toothpastes and alcohol-based mouthwashes. Isolating these non food items is not easy and to be quite honest I am getting quite fed up as nobody will tell me (or knows) why this is happening, what is causing it and what can be done about it. I am in the UK and it appears that most research is undertaken in the US and not many UK doctors will recognise such research. I often feel I know more about Coeliac than they do and have fired one doctor for that reason!

I sympathise with you and just wish someone would research these intolerences which I fully believe are caused by celiac disease - but few in the UK will acknowledge that.

Hi,

I’m wondering if your food intolerances are due to SIBO, H pylori or a histamine intolerance.  Celiac alone causes inflammation in our small intestine.  This leads to leaky gut and I believe intolerances.  As the inflammation subsides & the healing takes place, we should clear out SIBO and other issues if treated and then be able to tolerate those foods.  As far as chemicals in food, cosmetics and other products, I’m not certain why you have those intolerances.  It must be beyond frustrating.  I’m so sorry you are having these issues. I know how horrible the food intolerances are.  It’s terribly difficult.  I can’t believe this is my life.  I have my down days or parts of days.  I try to be mindful and have positive self talk to get me through this.  We have to do what we have to do to feel good and heal.  Sometimes we don’t know what to do.  Just keep looking for the answers.  Most docs are limited in their scope of understanding Celiac and associated issues.  I hope you get relief and heal.

[fergusminto]

Thanks Sharib. SIBO does tick most of the boxes but I had a breath test about 6 years ago which they said was negative but tbh they (doctors) are not really interested purely due to lack of knowledge on the subject together with lack of specialists. Thus may end up being a “self help/diy” approach so I will do my own research into SIBO and see what can be done at home. Many thanks and good luck with you problems - remember “we are not alone”!

[Sharib]

2 hours ago, fergusminto said:

Thanks Sharib. SIBO does tick most of the boxes but I had a breath test about 6 years ago which they said was negative but tbh they (doctors) are not really interested purely due to lack of knowledge on the subject together with lack of specialists. Thus may end up being a “self help/diy” approach so I will do my own research into SIBO and see what can be done at home. Many thanks and good luck with you problems - remember “we are not alone”!

SIBO can be cleared and reappear.  My GI doc said many people have low levels of it & their symptoms are more mild.  I’ve read many with Celiac also have SIBO.  Good luck to you too.  Yes, “we are not alone!”

[Kate333]

Last year & this year I had about 3 or 4 episodes of nausea, vomiting and diarrhea after eating at a restaurant two different times

Hi Sharib.  This comment jumped out at me because restaurants--even those claiming so-called "gluten-free" menus--are often sources of cross-contamination (cc).  It's very likely that you were inadvertently exposed to gluten in those places since you had such severe reactions after eating out.  Personally, I no longer eat at restaurants or even fast-food or carry out for that reason.   I haven't eaten restaurant food in almost 2 years, esp. since Covid shutdown.  Another big common source of cc: is shared cooking items like pans, grills, plates, utensils. 

As for scallops...perhaps you purchased a bad (spoiled) batch or just undercooked them?  Food poisoning from spoiled products or undercooking is a pretty common risk when buying raw fish/chicken/meat.  I don't know what to say about scrambled eggs.   They should be pretty easily digested.  Since you are so newly diagnosed, I would recommend just sticking to a mostly bland (I know, boring!) diet for the next several months to give your gut time to begin healing.  You could also pay for food allergy testing which I hear is very expensive and not terribly reliable. 

Best of luck on your healing journey!  

[Sharib]

7 hours ago, Kate333 said:

Last year & this year I had about 3 or 4 episodes of nausea, vomiting and diarrhea after eating at a restaurant two different times

Hi Sharib.  This comment jumped out at me because restaurants--even those claiming so-called "gluten-free" menus--are often sources of cross-contamination (cc).  It's very likely that you were inadvertently exposed to gluten in those places since you had such severe reactions after eating out.  Personally, I no longer eat at restaurants or even fast-food or carry out for that reason.   I haven't eaten restaurant food in almost 2 years, esp. since Covid shutdown.  Another big common source of cc: is shared cooking items like pans, grills, plates, utensils. 

As for scallops...perhaps you purchased a bad (spoiled) batch or just undercooked them?  Food poisoning from spoiled products or undercooking is a pretty common risk when buying raw fish/chicken/meat.  I don't know what to say about scrambled eggs.   They should be pretty easily digested.  Since you are so newly diagnosed, I would recommend just sticking to a mostly bland (I know, boring!) diet for the next several months to give your gut time to begin healing.  You could also pay for food allergy testing which I hear is very expensive and not terribly reliable. 

Best of luck on your healing journey!  

Hi Kate,

I’m sure I was cc at restaurants.  This was prior to my Celiac diagnosis although I was eating gluten free.  The scallops were well cooked and my partner ate them with no issues.  Histamine intolerance maybe or one could have been bad.

I eat my home cooked food and that’s it.  More bland.  I have my own pots, pans and utensils.  Most gluten has been removed from the house.  My partner is eating gluten-free bread and bagels.  
 

Our grill is contaminated with gluten.  I’m not sure if I can burn it off.  I have always placed it on high for 10 minutes before and after grilling to do my normal burn off and brushing off of grill grates.  Not sure if I need my own grill.  Crazy!  
 

Thanks for your input.

Shari

[Suzan]

On 12/15/2021 at 7:29 AM, Sharib said:

I was diagnosed Celiac via biopsies of my small intestine in June 2021.  It was highly suspected from biopsies done in October 2020.  I was gluten free at the start of 2020 and consumed gluten daily for 2 months prior to my scopes.  I didn’t have nausea, vomiting and episodes of diarrhea while eating gluten.  Maybe some more minor loose stool, but nothing like my liquid stool that was in the recent past.

In 2020 I noticed I didn’t tolerate eggs & nut butters.  I would have nausea & upset stomach.  Later the diarrhea would ensue.  

Last year & this year I had about 3 or 4 episodes of nausea, vomiting and diarrhea after eating at a restaurant two different times and at home.  I made 2 home cooked scallops to test out & the N, V & D ensued about 4 hours later.  Last week I reintroduced one scrambled egg.  About 3 1/2 hrs later I was nauseated and the loose stool at 2am, 7am and one or two more & then I was done.  
 

My diet consists of jasmine or white rice, chicken breast & thighs, various veggies.  Breakfast is cream of rice, coconut milk mixed with water, blueberries, MCT oil & Great Lakes collagen. Coconut milk is 2 ingredients-coconut and water.  I eat mostly organic.  
 

I recently treated SIBO with supplements.  Im treating H pylori with supplements now and it will be completed at the end of December.  I’m sure I have leaky gut.  I have malabsorption from Celiac based on my labs.  It seems my food intolerances are due to all of these things.  I have worked with a Functional doctor.  Currently I work with two dieticians and one has Celiac.  She also had H pylori and food intolerances.  I’m wondering who else has food intolerances or any of my other issues.  What has helped heal your gut/small intestine to alleviate food intolerances?  Any insights are appreciated.

Hope this wasn’t too long.

Thanks!

Shari

Hi Shari, You are lucky to have found a dietician with Celiac, that should really help you find the best approach to diet and good health. I have read that SIBO is a side effect of celiac disease and to expect it to pop up again. Have you looked at the Fast Track Diet developed by Norm Robillard for acid reflux and SIBO? The diet limits fermentable carbs and causes bacteria to die off due to lack of food.  Norm Robillard is a micro-biologist who understands the importance of maintaining your gut micro flora, treatment of SIBO with either herbals or pharmaceutical antibiotics harms the good bacteria too. I combine the Fast Track Diet and the Monash University FODMAP diet as I found I am also fructose intolerant. Both the Fast Track Diet and the Monash FODMAP programs have inexpensive apps that may be worth your time. Like other members here I have only found Sac. boulardii to help with my digestion, other probiotics are like consuming air, nothing happens.  To help digest beans I take a generic form of bean-o found at Wal-mart. Regular bean-o contains mannitol which can cause gas all on its own. Good luck!!

 

[KarenS2]

On 12/19/2021 at 5:21 AM, Sharib said:

Hi Kate,

I’m sure I was cc at restaurants.  This was prior to my Celiac diagnosis although I was eating gluten free.  The scallops were well cooked and my partner ate them with no issues.  Histamine intolerance maybe or one could have been bad.

I eat my home cooked food and that’s it.  More bland.  I have my own pots, pans and utensils.  Most gluten has been removed from the house.  My partner is eating gluten-free bread and bagels.  
 

Our grill is contaminated with gluten.  I’m not sure if I can burn it off.  I have always placed it on high for 10 minutes before and after grilling to do my normal burn off and brushing off of grill grates.  Not sure if I need my own grill.  Crazy!  
 

Thanks for your input.

Shari

Has the 10 mins burning-off helped? Gluten is just like any other protein and should be 'charred' by high heat unless any pieces sticking outside the heated area.

[Sharib]

14 minutes ago, KarenS2 said:

Has the 10 mins burning-off helped? Gluten is just like any other protein and should be 'charred' by high heat unless any pieces sticking outside the heated area.

I have since read that heat from the grill will not clear the grill of gluten.  

[Scott Adams]

Many years ago, back in the 90's, it was believed that high temperatures could degrade gluten, for example those found in deep fry vats. I do not believe a study was ever done on this concept, but it seems like it would be relatively easy to conduct such a study, and the results would be very important to many celiacs.