Test results question

[knitty kitty]

@Maja57 and @asaT,

I found the Autoimmune Protocol Diet very helpful in reducing inflammation and improving health.  

The Autoimmune Protocol Diet has been studied and shown to work.

"Efficacy of the Autoimmune Protocol Diet for Inflammatory Bowel Disease"

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

Dr. Sara Ballantyne, herself a Celiac, developed the diet.  I bought her book:

The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body

I followed the AIP diet and began to feel better within weeks.  I did not consume fermented dairy as recommended due to casein allergy and lactose intolerance.  

Yes, it is a very strict diet, but I was highly motivated to find some improvement in my health. 

I also supplemented with B Complex vitamins, Vitamin D and C, along with magnesium and high dose Thiamine.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I hope you will give the AIP diet a try.  I know it helps.  

[RMJ]

3 hours ago, Maja57 said:

I was diagnosed in May 2022 with a antibody test with a reading of greater than 250. Had another bloodwork antibody test 5 months later and still reading greater than 250. Following gluten free diet. Why doesn't test show actual reading if above 250? I was so disappointed it hardened come down but without knowing how high it was to start with it could of come down but not enough to be below 250. Anybody else experience this?

If the result is >x, it is because the sample is outside the range that will give an accurate number.  It is like if you had a bathroom scale that went up to 250 pounds, but someone who was 500 pounds stepped onto it.  You’d know it was >250, but you wouldn’t know the actual weight.

The FDA authorizations for the celiac antibody tests are for diagnosis of celiac disease, NOT to follow people’s progress in reducing antibody levels after diagnosis - even though many, many doctors and patients (including me)use it that way!  

Could a lab get an actual result from the serum sample?  Yes, they would have to dilute the sample and rerun it.  But they wouldn’t know how much to dilute it to get it into the range that the test can quantify, so they might have to rerun it a few times.  Obviously more time and expense, and not necessary to diagnose celiac disease.  

I hope your antibody levels come down below 250 soon.  They may have already decreased dramatically!  Did the lab also run an EMA test by any chance?  It is reported in a different manner which may be easier to compare.

 

[Maja57]

Don't think I have had that or know about an EMA test.  I have had an endoscopy that confirmed Celiac. You're right if my result was anywhere above 250 initially I could of still come down just not enough. I guess what is upsetting is it looks like I've been cheating when I haven't because the doctor can't see the change.

[T burd]

1 hour ago, trents said:

Lactose is the sugar in milk products and many celiacs are lactose intolerant. This intolerance often disappears once the villi have healed. Casein is one of the two major protein components in dairy, the other being whey. Sometimes people who have dairy intolerance do better with fermented dairy products such as yogurt and hard cheeses. The fermenting process breaks down some of the lactose and may alter the proportions of proteins.

I would suggest a trial period of say, two months, of giving up dairy altogether and see if symptoms improve. Then consider adding back in small amounts of fermented dairy products to see how well you tolerate them.

My G.I. mentioned refractory or non responsive celiac to me… I hope that isn’t an issue here. Check lotions and face creams and make up, lip gloss, shampoos, soaps, and the new one I just found would be cleaning soaps that spray… I almost threw up after spraying my shower with scrubbing bubbles total bathroom. 
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/what-to-do-when-a-gluten-free-diet-doesnt-work-1/

 

[knitty kitty]

Non-responsive celiac disease may be due to histamine intolerance.  Histamine is released by mast cells as part of the immune response.  Histamine promotes inflammation and stimulates the immune system to make a bigger immune response, including making more antibodies.  

DAO is an enzyme that breaks down histamine.  Because of malabsorption of micronutrients, we might not make enough DAO.  DAO supplements are available.  Histamine can also be broken down by B12 and Vitamin C, other micronutrients that may be in short supply.

Consuming a Low Histamine Diet is beneficial in reducing histamine levels.  The Autoimmune Protocol Diet is a low histamine diet.  

Reactions to heavily scented cleaning products is indicative of histamine intolerance.  I was so sensitive to scents, I avoided the perfume counters in stores.  

Lowering histamine levels by following the AIP diet and supplementing micronutrients really helps.

 

Non-responsive celiac disease may coincide with additional food intolerance/malabsorption, including histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/33268003/

And...

Increased release of histamine in patients with respiratory symptoms related to perfume

https://pubmed.ncbi.nlm.nih.gov/17877753/

[Wheatwacked]

It seems no matter what immune system dysfunction you have, you likely are difficient in vitamin D. It's almost like government and the health care industry encourages it. Until the industrial revolution we spent daytime in the sun creating vitamin D for immediate use and for storage for the winter. There is a homeostatic response (tanning and regulatory enzyme feedback), as there are with other vitamins, that maintain appropriate levels, but our lifestyles and poor advise from healthcare never let us get close to. After 8 years of 10,000 IU a day and testing my doctor and I have determined that I require that much to maintain 80 ng/ml.

Just a thought, if that level is admitted to, it could open the way for unions to sue factories to pay for testing and vitamin D supplemetation for worker health. An expense Management won't like.

Regarding the ridiculously low RDA recommendation of only 600 IU per day: "Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity." What is vitamin D toxicity? Should I be worried about taking supplements?

"So, once you get your Vitamin D 25(OH) test back, you may face another hurdle. The standard lab ranges for deficiency are way too low!! The standard lab range says anything >30 ng/ml is normal... This simply isn’t true, though. In immune issues like Mast Cell Activation Syndrome and also in Histamine Intolerance, you are looking for a range between 60 and 100. That’s double the “normal” lower limit of the labs!"  Will Vitamin D help or hurt you if you have Mast Cell Activation Syndrome or Histamine Intolerance?

"Moreover, the strict regulation of these enzymes in immune cells is highly suggestive for an autocrine/paracrine role in the immune system, and opens new treatment possibilities. Indeed, it suggests that vitamin D supplementation may be an adequate strategy for the treatment of immune-associated diseases"  Regulation of vitamin D homeostasis

[asaT]

On 10/6/2022 at 1:47 PM, Scott Adams said:

Let us know how that turns out, but not matter the results, it seems like trying out a gluten-free diet, at least for a few months, should be in your future. The time period on test results can vary a lot, so two weeks might be still in the normal range for some doctors/areas.

If your diagnosis isn't celiac disease (which I would still lean towards based on what you've shared here), then most certainly it would fall into the non-celiac gluten sensitivity area, and the outcome is the same--a gluten-free diet.

I have celiacs. TTG IgA was 45 (normal less than 15) and EMA IgA was positive with a 1:20 titer (less than 1:5 normal). I will be posting lots more questions!!! thanks for all the help here so far

[trents]

13 minutes ago, asaT said:

I have celiacs. TTG IgA was 45 (normal less than 15) and EMA IgA was positive with a 1:20 titer (less than 1:5 normal). I will be posting lots more questions!!! thanks for all the help here so far

Thanks for getting back to us with results. Now you know the reason for your health issues and can begin to address it.