Celiacs like symptoms triggered by Whey

[NoWhey]

I realize that Celiacs is by definition an autoimmune response triggered specifically by gluten but is there any reason to believe that the same response can't be triggered by other proteins? I'm asking because I've been dealing with a problem that seems to be very similar to Celiacs symptoms but is definitely not Gluten.

I won't go into all the details but I started having gastrointestinal problems. Went to have it checked out and was diagnosed as having Crones. I never felt comfortable with the diagnosis because there were many symptoms that I felt didn't align with Crones and were being ignored. There was definitely an association with something I was ingesting. I would get sick withing 1-24 hrs after ingesting, would feel like I got hit by a truck for the next three days and then it would take the next couple of weeks to fully recover. After tons of experimenting I've narrowed it down to Whey protein. It was really tough because they put the stuff in a ton of things that you don't think of as containing any dairy.

I was wondering if anyone out there in this community had any information. It's really hard to get any good information on Whey protein since it's used so much as a supplement.

 

Thanks.

[GFinDC]

Hi,

You could check into casein sensitive enteropathy.  That is a reaction to casein, protein in cow dairy.  The article below talks about people with celiac disease having a reaction to cow dairy protein.

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

People with celiac also can have problems digesting lactose, a cow milk sugar.  That's because the enzyme (lactase) that digests lactose sugar is made by the small intestine villi.  When those villi are damaged by celiac they don't produce the lactase enzyme.

[cyclinglady]

It sounds like you are doubting your Crohn’s diagnosis.  Consider getting your records and getting a second opinion.  Know that not everyone has classic Crohn’s symptoms.  My niece just used to have these GI attacks a couple of times a year.  Celiac disease was firmly ruled out, but her 4th GI found Crohn’s damage well beyond the reach of both scopes.  In fact, the tiny camera almost got stuck!   She is doing well on biological treatment.  

Back to you.

Milk proteins are hard to digest. They are one of the known allergens and can trigger inflammation.  Not necessarily good when you are dealing with inflammation and damage caused by Crohn’s.  Intestinal damage can also cause lactose intolerance as GFinDC wisely pointed out.  

Consider the Autoimmune Paleo Diet.  It was once a crazy diet found on the internet, but some folks scrapped up enough money to fund a tiny research study on IBD patients (Crohn’s and UC) at Scripps in San Diego.   Following the AIP diet, and not changing their medications, they achieved a 78% remission rate in just six weeks or so.  That is amazing.  But the study was tiny, so more research is needed.  Unfortunately, no one wants to fund studies that involve food.  No money to be made for companies.  

Remember Autoimmune has a mind of its own.  Antibodies can ramp up and attack for weeks or longer once triggered.  I have celiac disease which thankfully can be controlled by not ingesting gluten.  But I also have Hashimoto’s and Chronic Autoimmune Gastritis.  Those two I have no control over.  Who knows what triggers those?  But I suspect foods come into play somehow, along with virus/bacterial exposures and stress.  Hard to avoid the latter, so I choose to eat well (real food, not processed and that includes supplements which are processed).  

So, my immediate advice is to eliminate dairy since you know it makes you sick.  You might even get it back someday, with healing.  

See another doctor because either your diagnosis is wrong or you are struggling with denial which is normal!  Everyone goes through the grieving process when you get a life-changing diagnosis.  

Hugs!  

Here is the study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

 

[NoWhey]

Thanks. I'll check out the link. I'm positive my problem isn't gluten. When I'm feeling good I can eat it with no problems. I hope you don't mind my posting to a Celiacs forum when I know I don't have Celiacs but the similarity and lack of alternative sources of information led me to post here.

It definitely isn't Lactose intollerence and I'm almost certainly sure it isn't Casin. I have a significant reaction to food items that contain Whey protein and if I'm extremely careful to avoid them I'm ok. The only unidentified reactions I've had were when I ate out and couldn't confirm the food contents and only a single time where an ingredients label didn't indicate any whey protein but I still got sick. I'm still confident enough that I suspect that the ingredients list was wrongly labeled although it did have me wondering if I was correct. When I do eat something I shouldn't I usually know within 1 hr and peaks in 24hrs. In about three days I'm feeling better which I suspect is how long it takes to pass it.

When I eat something with Whey It's like a full body inflammation attack. My feet hurt, my muscles are extremely tight, and I just feel head to toe awful.

 

[cyclinglady]

Well, they do not know what triggers any autoimmune disease.  celiac disease is the only AI which the trigger is known—gluten.  

When I was diagnosed with celiac disease, my only symptom was anemia.  I just went in for a routine colonoscopy because I had  hit 50 and all my friends were getting screened for colon cancer.  My GI, during the consult, noted my anemia.  He suspected celiac disease.  No way, I thought.  I knew what it meant.  No gluten.  Strangely, my hubby had been gluten free for 12 years (he went gluten-free per the  advice of two medical doctors).  I had anemia because I had a genetic anemia.  I did not know you can have more than one type of anemia!  I ate gluten and had no issues at all!  I did know that dairy was hard in my gut, but as long as I avoided nuts, garlic, onions, and dairy, I was asymptomatic.    I ate lots of bread and baked goods, and never had a gut issue!  

He ordered a complete celiac panel and I test positive to only the DGP IgA which is not common.  Yet biopsies from the endoscopy revealed damage.  

I am sharing this because you can not say that gluten or any other food is not a problem.  Autoimmune disease manifests in weird ways.  Some celiacs get a horrible rash, some get anemia, some get joint problems, some get brain fog, and some get get GI problems.  The weird thing is that symptoms can change.  This is not just my observations, but those from celiac disease GI specialists.  I imagine the same for other AI disorders.  That is why if celiac disease is studied, the hope is they can crack the code for other AI disorders.  

Consider that AIP diet.  It is an elimination diet.  Eat only a few non-inflammatory foods for a few weeks and then add foods back in noting your symptoms.  This diet will not harm you.  No risks, unlike medications but are often necessary.  

I encourage you to keep researching.  It is your best defense!  

[NoWhey]

Thanks. That's what I had suspected about autoimmune diseases. It seems silly to think that gluten would be the only  protein that would trigger that reaction. I'm %95 sure it's whey protein. If I can avoid it I'm fine. I only seem to have a problem when I go out to eat and can't verify that it's not in there. I don't eat out much any more and I'm probably going to have to completely eliminate it. (lots of sympathy to my Gluten intolerant friends. It's not easy) It's been an interesting adventure to figure out what it's in. They put it in some surprising places. It's especially difficult when you ask for something dairy free but they just take their best guess and don't know that it's used in dough conditioners or emulsifiers in salad dressings, and other places.

That's why I'm questioning my Crohn's diagnosis. It doesn't seem to be random flair ups. It seems to be very directly tied to ingestion of Whey protein. No whey, no problem.

[Fenrir]

I'm finding that I don't process casein very well ever since I started having celiac symptoms. My antibodies and biopsy results post dx show that I've healed but I still don't process casein well. Strangely, I can still process whey protein fine so long as it contains no casein. 

Given the types of proteins whey and casein are made of are different, it might be that I'm just sensitive to casein proteins but not whey proteins. Whey isolates don't bother me at all but whey concentrates, I also have issues with soy it seems. I haven't been tested for either but I notice that I have more GI issues when I eat foods with soy and casein in them.