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Celiac with other food intolerances

LadyofLove

By LadyofLove
in Coping with Celiac Disease

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LadyofLove Newbie
LadyofLove
Posted

Does any one know how long it will be until the dairy issue going to go away after being gluten free?

I feel better but doing as my dietician says and trying to reintroduce proper dairy is causing a lot of issues.

Hello I’m new but I thought I’d ask here  i am currently gluten free after said celiac diagnosis and have been for 7 months I do feel better I was almost in the hospital which is how bad it got until people started to listen to me. Previously I was dairy free for only a month but have been lactose intolerant for atleast a decade. Because I suffer from a bowel disease I have a dietitian who now tells me to try full dairy again by reintroducing it because “gluten is the issue” however I have tried repeatedly to do this but when i try I causes massive bowel problems, pain and so.
 

More info:
(I can’t take soya milk since that brought me up in rash I also can’t seem to tolerate milk. However some foods with little soy or dairy allows me to have small solid rather than D)

 

TiA X

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trents Grand Master
trents
Posted

Welcome to the forum, @LadyofLove!

I'm afraid you have some misconceptions about being able to eventually go back to consuming dairy safely. That is not guaranteed. It is true that many celiacs are able to return to consuming dairy once there is thorough healing of their damaged small bowel villous lining, but not all can. And even if they can, thorough healing of that villous lining can take two years or more once a strict gluten-free diet is in place.

The other thing you need to be aware of is that lactose intolerance is not always the issue. Some celiacs cannot tolerate the protein "casein" in dairy. For some, casein can cause villi blunting just like gluten as the two have similar structures.

captaincrab55 Collaborator
captaincrab55
Posted

Welcome LadyofLove,  Unfortunately dairy is a curse to some of us, including me.  I was diagnosed in 09 and still can't tolerate dairy.  Late last year I did a test with Everywell( https://www.everlywell.com/) and dairy came up as a No No, but cheddar cheese came up as ok.  I've tried it moderately several times with positive results.  I will pick and choose when and where I try it several more times, before adding it back as A-OK!

BTW, The test also showed garlic as a potential issue.  I removed it and my indigestion episodes went way down.  

Good Luck

trents Grand Master
trents
Posted

@LadyofLove you might want to have some more general food sensitivity testing done: 

 

Scott Adams Grand Master
Scott Adams
Posted

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

 

 

  • 3 weeks later...
Rhapsody Newbie
Rhapsody
Posted
On 2/8/2024 at 2:12 AM, LadyofLove said:

Does any one know how long it will be until the dairy issue going to go away after being gluten free?

I feel better but doing as my dietician says and trying to reintroduce proper dairy is causing a lot of issues.

Hello I’m new but I thought I’d ask here  i am currently gluten free after said celiac diagnosis and have been for 7 months I do feel better I was almost in the hospital which is how bad it got until people started to listen to me. Previously I was dairy free for only a month but have been lactose intolerant for atleast a decade. Because I suffer from a bowel disease I have a dietitian who now tells me to try full dairy again by reintroducing it because “gluten is the issue” however I have tried repeatedly to do this but when i try I causes massive bowel problems, pain and so.
 

More info:
(I can’t take soya milk since that brought me up in rash I also can’t seem to tolerate milk. However some foods with little soy or dairy allows me to have small solid rather than D)

 

TiA X

Welcome! Not sure there is any set time on a lot of these food issues. I've knowingly had celiac disease for 11 years and my life is elimination. I tried dairy just recently because I was diagnosed with Diabetes 2 and Geographic Tongue (poss. related to celiac disease) but had severe neuropathy pain from it and had to completely stop. Trial and error seems to be my thinking. I'm able to enjoy/tolerate hemp milk so that is of some help. I hope it works out for you, though I read it isn't the norm. Best of Luck. 

knitty kitty Grand Master
knitty kitty
Posted

@Rhapsody,

Welcome to the forum!

Geographic tongue has been linked to deficiencies in Pyridoxine Vitamin B6, Folate B9, and Cobalamine B12, as well as deficiencies in zinc, iron, and Vitamin D.

Both types of Diabetes have been linked to low Thiamine Vitamin B1 levels.  

Celiac Disease causes malabsorption of essential nutrients like the B Complex vitamins and minerals. 

Talk to your doctor about supplementing in order to boost your absorption of essential vitamins and minerals.

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Rhapsody Newbie
Rhapsody
Posted
4 hours ago, knitty kitty said:

@Rhapsody,

Welcome to the forum!

Geographic tongue has been linked to deficiencies in Pyridoxine Vitamin B6, Folate B9, and Cobalamine B12, as well as deficiencies in zinc, iron, and Vitamin D.

Both types of Diabetes have been linked to low Thiamine Vitamin B1 levels.  

Celiac Disease causes malabsorption of essential nutrients like the B Complex vitamins and minerals. 

Talk to your doctor about supplementing in order to boost your absorption of essential vitamins and minerals.

Thank you very much! 

I know next to nothing about it so this information is very helpful!  I'll make sure they know about this before my next labs. I'm on prescription vitamins now but will definitely ask about this next visit. 

Gratefully, R

knitty kitty Grand Master
knitty kitty
Posted
On 2/8/2024 at 1:12 AM, LadyofLove said:

Does any one know how long it will be until the dairy issue going to go away after being gluten free?

I feel better but doing as my dietician says and trying to reintroduce proper dairy is causing a lot of issues.

Hello I’m new but I thought I’d ask here  i am currently gluten free after said celiac diagnosis and have been for 7 months I do feel better I was almost in the hospital which is how bad it got until people started to listen to me. Previously I was dairy free for only a month but have been lactose intolerant for atleast a decade. Because I suffer from a bowel disease I have a dietitian who now tells me to try full dairy again by reintroducing it because “gluten is the issue” however I have tried repeatedly to do this but when i try I causes massive bowel problems, pain and so.
 

More info:
(I can’t take soya milk since that brought me up in rash I also can’t seem to tolerate milk. However some foods with little soy or dairy allows me to have small solid rather than D)

 

TiA X

Hey, lady,

Some people, because of their genetics, stop producing LactAse, the enzyme that digests the sugar (LactOse) in dairy, when they become adults.

Some people with Celiac Disease have digestive problems after  consuming milk and dairy products because the villi in the small intestine have been damaged by the autoimmune response to gluten.  The villi secrete digestive enzymes like LactAse and absorb nutrients from our food like anemone filtering seawater.  Damaged villi cannot produce LactAse nor absorb nutrients well.  It can take two years or longer to heal the digestive tract.  

Some people with Celiac Disease have digestive problems after consuming dairy because they react to the protein in dairy, Casein, because casein resembles the protein gluten, and they have an autoimmune response to Casein the same as to gluten exposure.  

I found following a low histamine Paleo diet very helpful in recovery.  I like Dr. Sarah Ballantyne's book The Paleo Approach.  The AIP diet cuts out inflammatory foods, foods high in plant Lectins (grains, legumes, seeds and nuts), processed foods, dairy, soy and nightshades.  After a few weeks when my symptoms abated, I added in foods singly and slowly and noted reactions in my food mood poo'd journal.  

I also boosted my absorption of nutrients by taking B Complex, Vitamin D and minerals.  I also took Benfotiamine a form of Thiamine that has been shown to promote healing in the intestines.  

Here's links to discuss with your dietician...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

Keep us posted on your progress!

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