tTg-IgA still elevated after trying to be mega strict

[NavyMom]

I've never posted here before, but you all are my people 100%.  So I have a question for you.  I got diagnosed via blood test and endoscopy in Sept '23 for Celiac.  I know some people get bummed out when they get their diagnosis, but I was over the moon!  I wasn't crazy after all and after being brushed off by so many docs telling me it was in my head, I actually found relief in the diagnosis.  It was like prior docs (for 15+ years!!) thought that I wanted to be this sick all of the time.  crazy...but I digress.  

My question is: Have you ever experienced or know someone who was being incredibly vigilant about being gluten free and you/they go in for follow up blood work and the numbers are HIGHER (like double) than when you/they got diagnosed?  My GI says it has to be something I am eating every single day and my mind is legit blown.  I have no idea.  So I decided that I wanted to become a self appointed google doc and try to find out any other possible causes.  One of the things I found was that a tTg-IgA test could also run high with celiac, following a gluten-free diet, if you have another autoimmune disease that has decided to buddy up with celiac.  Have you all ever heard of this or experienced it?  if so, what did you get tested for to finally figure out this giant jigsaw puzzle?

In the mean time, I am going on a full blown strict Gluten Contamination Elimination Diet (GCED) for 90 days until my next blood test.  I am thinking that if I was accidentally ingesting gluten (before GCED) that this should show up in my next test because there is no possible way that gluten is sneaking in this diet,  Thank you Celiac.com for providing me with valuable info about this diet!  If this doesn't work, I really don't know what to do besides requesting testing for other possible autoimmune diseases.  I am being so incredibly strict.  I've replaced everything in my kitchen, I did a full blown read every single label in my kitchen and donated anything I can't have, my family is super supportive and has also gone gluten-free, and I'm not eating anything that I do not prepare from scratch at home.  I've triple checked with the pharmacy to make sure all my OTC and script meds are gluten-free.  I am fully invested in feeling better. 

Any advice or input you may have will be appreciated regardless of how big or small - or just say hello because we are all in this together.

Lots of love to this community - the struggle is real, but we got this!

BTW - Big love to any GI Docs out there, your impact to the world of celiac patients is bigger than you realize.

Thanks!

-NavyMom (Bridget)

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.). Be sure that no gluten is in your diet, meds, supplements, etc.

For some people there are other conditions that can cause elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA). This article discusses them:

 

 

[NavyMom]

58 minutes ago, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.). Be sure that no gluten is in your diet, meds, supplements, etc.

For some people there are other conditions that can cause elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA). This article discusses them:

 

 

Thanks Scott!  I appreciate everything you do for the Celiac Community and value the time and effort you put into Administering Celiac.com.  I enjoyed both articles.  I feel comfortable with the first article.  On the second article referring to non-celiac disease conditions, do you happen to know if the autoimmune tests are different than what is in standard annual blood work ups (for instance, a typical thyroid panel or is it something different)?  If I need to ask for testing, do I just request testing for the list of possibilities in the article?  I'm really sorry, this is all very new to me and I am still educating myself.  I can talk to my GI about it should my test results come back elevated again.  Thanks again for your input!

-B

[Scott Adams]

I believe a typical thyroid panel would reveal possible thyroid issues, but any autoimmune thyroid disorder may cause elevated tTg in some people (for example Hashimoto's disease is an example). The other thing to consider would be going casein/dairy-free for a few months and have your tTg levels rechecked, as this is also a possible trigger of high tTg in some people. 

[RMJ]

Do the two tests you’re comparing have the same normal ranges? The units used for these tests aren’t absolute weight/volume units - each test manufacturer uses their own.  (It would be as if one person measured length in banana units and another measured length in cucumber units).

The health care organization that I go to recently changed their TTG IgA test, again.  Ten years ago the normal range was 0-19.  Then 0-3.  Now 0-4.99. All blood drawn at the same facility!

[NavyMom]

20 hours ago, RMJ said:

Do the two tests you’re comparing have the same normal ranges? The units used for these tests aren’t absolute weight/volume units - each test manufacturer uses their own.  (It would be as if one person measured length in banana units and another measured length in cucumber units).

The health care organization that I go to recently changed their TTG IgA test, again.  Ten years ago the normal range was 0-19.  Then 0-3.  Now 0-4.99. All blood drawn at the same facility!

Great question!  Thanks for making the time to help me think of what could be going on.  I'll double check with doc.  I assumed it was the same, but we know what happens when one assumes....  The most recent one was the 0-4.99 range one for normal and I was over 20 and it's just bugging me so bad because when I say I am being super strict, it's really strict - no cheat days, no special treats....and gosh I miss that stuff!  If I was being careless I'd get it and own it, but it's just wild to me that it went up.  I'm also wondering if maybe the stuff I was eating that was labeled gluten-free was cross contaminated and maybe I'm just super sensitive?  So that's why I'm trying the Contamination elimination diet to see if maybe that's the culprit.  So this is just so frustrating for me.  I really appreciate you thinking of that as a possible reason the numbers increased.  I'll follow up on that one!  Great idea!

-B

[NavyMom]

21 hours ago, Scott Adams said:

I believe a typical thyroid panel would reveal possible thyroid issues, but any autoimmune thyroid disorder may cause elevated tTg in some people (for example Hashimoto's disease is an example). The other thing to consider would be going casein/dairy-free for a few months and have your tTg levels rechecked, as this is also a possible trigger of high tTg in some people. 

On more question and forgive my ignorance in advance.  Is lactose free the same as dairy free?  If I am drinking lactose free milk is that ok (like in smoothies)? Or is it any animal milk product period?  I can try that, at this point I am willing to try anything to try to get this controlled.

Thanks again for making time for me, it means a lot.

-B

[Scott Adams]

No, lactose-free and dairy-free are not the same. Here's the difference:

Lactose-Free: Lactose is a type of sugar found in milk and dairy products. Lactose-free products are those that have had the lactose removed or broken down into simpler sugars, typically through the addition of the enzyme lactase. People who are lactose intolerant lack the enzyme lactase needed to digest lactose properly, leading to symptoms like bloating, gas, and diarrhea. Lactose-free products are suitable for individuals who are lactose intolerant but still want to consume dairy. Many dairy products can now be purchased which are lactose-free, for example Lactaid milk.

Dairy-Free: Dairy-free products are completely free from any ingredients derived from milk. This includes not only lactose but also proteins such as casein and whey. Individuals who are allergic to milk proteins or who follow a vegan diet, which excludes all animal-derived products, choose dairy-free alternatives. Common dairy-free alternatives include plant-based milk such as almond milk, soy milk, and coconut milk.

[RMJ]

2 hours ago, NavyMom said:

On more question and forgive my ignorance in advance.  Is lactose free the same as dairy free?  If I am drinking lactose free milk is that ok (like in smoothies)? Or is it any animal milk product period?  I can try that, at this point I am willing to try anything to try to get this controlled.

Thanks again for making time for me, it means a lot.

-B

Casein is the protein in milk.  Lactose is the sugar.  So lactose free is not the same as dairy free.

[Neuronutritionista]

Research "gluten cross-reactivity." Other foods with protein structure similar to gluten's may be continuing to trigger the same immune reaction. Vibrant Wellness has a few different labs you could request, including food sensitivity, immune system, wheat zoomer (to break down reactions to specific parts of wheat (gluten and non-gluten), and leaky gut.
 

Personally, I would try cutting out all the common cross-reactive foods and re-test in 1 month and 3 months. Bc you may not be sensitive to that food per se, so it won't show on a food sensitivity test, but it is still triggering the gluten response bc of its molecular structural similarity. 

[Scott Adams]

This article may be helpful:

 

[Wheatwacked]

On 2/21/2024 at 4:49 PM, NavyMom said:

I really don't know what to do besides requesting testing for other possible autoimmune diseases.

Focus on malnutrition, reducing your omega 6:3 ratio to around 3:1 (typical western diet is above 14:1).

Making your own fermented pickles or buy fermented (no vinegar) will help repopulate your gut with lactobacillus which excretes lactase to reverse lactose intolerance.  100% Grass Fed milk has a omega 6:3 ratio of 1:1.  Organic milk is 3:1 and regular dairy milk has 5:1.  "Milk does a body good".  20 ounces of whole milk has 1000 mg of potassium and the Daily Value recommended is 4700 mg a day.  Without milk it is hard to do.  98% of the potassium is inside the cells and that difference helps get nutrients into the cells.

Our nutrition experts recommend no liver, beef or eggs and that has caused defficient levels of choline, leading to fatty liver, neurotube defects in embryos, brain fog, gallbladder related issues.  The RDA is 500 mg a day.  90% of us do not get even that much.  Gluten foods compensate by rules requiring folic acid fortification.  Choline  and folate neutralize homocysteine.  Homocystene is the toxic metabolite of protein metabolism and high levels are an indicator of cardiovascular inflammation and a lot of damage that no one admits to.  While folic acid has been linked to cancer, Choline and Folate have not.

Get your vitamin D up to 80 ng/ml.  I take 10,000 IU a day.  The experts perfer us near deficiency.

Vitamin D level and homocysteine blood tests are ones you should ask for.

Iodine and vitamin D and Choline are crucial.  Also the B vitamins.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  The ones that helped me the most noticibly was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.  After 10 years GFD, increased Iodine has taken me to the next level of healing.  Growing up pre 1970 a glass of milk and two slices of bread had 300 mcg of Iodine.  Since 1970 when they switched from iodine to bromine as a the conditioner, the average intake is half that and prescriptions of thyroxine has doubled and cancer is on the rise.  We've been misled nutritionally.

No proof of this but the outbreak of MRSA infections in the hospitals is suspiciously close to the removal of Iodine for sterilization in hospitals.

1. 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective
2. 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
3. Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
4. Iodine – 650 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.
5. Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."  Low iodine interfere with fertility and is the cause of cretenism.
6. Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
7. 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
8. 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
9. 1000 mcg B12 - creates hemoglobin for oxygen transport
10. 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
11. I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.
12. Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
13. Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

 

 

 

Edited February 24 by Wheatwacked