Hypersensitivity to Protein

[agentace]

Hi All, Newly diagnosed yesterday. I was not surprised, as I was pretty sure I had celiac, but of course it doesn't end there. My biopsy report says "Findings are compatible with a malabsorption pattern of injury to include celiac sprue among other entities such as protein hypersensitivity, malnutrition and autoimmunity." Does anyone know what the protein hypersensitivity is about? The GI doctor just told me to go to my primary for food allergy testing. Wondering if this could be a sensitivity to dairy or soy?

[cyclinglady]

Did you have a celiac disease blood panel test run?  Any positives?  

The pathologist only sees the tissue.  He can not always determine the source of the damage.  So, he writes a general statement.  Celiac disease is very common, but other things can cause villi damage too:

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

If you have a positive celiac disease blood test and villi damage, you probably have celiac disease.  If you have not had the celiac disease blood test, get one now before you go gluten free.  

Allergies?  Possible.  Again, the pathologist does not know.  Usually protein allergies that severely damage the small intestine happen in young kids.  You might even have an autoimmune condition that attacks your small intestine and has nothing to do with celiac disease (like Crohn’s).  

Many celiacs do have food intolerances due to damaged villi being unable to release enzymes to help digest things like milk sugars (lactose).  Just digesting anything can hurt.  Like trying to digest while corn or nuts.  The intestine is damaged and it is going to hurt.  

You could have a milk protein or nut allergy, but that would usually involve other systemic issues like hives, rashes, nose running, sneezing, throat closing, etc.  

If you have celiac disease and I. Order to expedite healing, I have a few things to offer.  1.  Eat real, non-processed food you prepare yourself (no need to worry about reading labels as a banana is a banana!), 2.  Do NOT eat out unless it is 100% dedicated gluten free.  3.  Keep a food journal to help identify food intolerances.   Once you feel better, you can take more risks.  Expand your diet slowly.  Be patient and it takes up to a year to heal.  Really.

Read, read, read about celiac disease and learn about safe kitchen practices and cross contamination.  

Welcome to the forum!  

Edited January 21, 2020 by cyclinglady

[agentace]

Interesting. Yes, my blood test was "weak positive" for celiac. I would love to not have yet another restriction on my diet!

[Fenrir]

For the protein sensitivity bit, it's probably a good idea to have food allergy testing done. Protein sensitivity could be to milk, eggs or soy as the most common proteins people have allergies/sensitivities too. 

[cyclinglady]

1 hour ago, agentace said:

Interesting. Yes, my blood test was "weak positive" for celiac. I would love to not have yet another restriction on my diet!

A weak positive is a positive.  Toss in your intestinal damage and you have celiac disease!  

A positive is a positive.  Like you are either pregnant or not.  

My first GI said that I had a weak positive because I tested positive to only one of the celiac disease tests (DGP IgA) on the complete panel he ordered.  But I had a Marsh Stage IIIB per my biopsies.  Plenty of damage!  I also never had a positive on the EMA and TTG and they were run many times.  Within three months my life-long anemia resolved.  Later, repeat endoscopy/biopsies revealed healed and healthy villi.  

Sometimes GIs or PCPs will say a weak positive if you are just out of range.  It could be just out of range for another autoimmune disease.  But again, in your case, you have intestinal damage.  

Let me tell you, celiac disease is an easier diagnosis to have.  Allergic to milk....really allergic enough to damage your GI tract and you can die from exposures. Steroids are prescribed.   Celiac disease is not going to kill you fast, that is for sure.   Other things that cause villi damage require drugs like immune suppressors or chemo drugs.  

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/pdf

I am sorry that your doctor was not very clear causing you to have doubts.   He may be waiting to see how you respond to the diet.   Get tested for allergies, but know that all allergy testing is about 50% accurate.  Know that you can have concurrent illnesses like Crohn’s or SIBO besides food intolerances when you have celiac disease.  

https://www.foodallergy.org/life-with-food-allergies/food-allergy-101/diagnosis-testing/skin-prick-tests

It is hard to accept a celiac disease diagnosis. Denial is part of the grieving process.  But the good news is that you can get well without drugs.  Just a dietary change that months later will seem normal.