Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
7 7
Bob Healey

Finding certified versions of naturally gluten free products

Rate this topic

Recommended Posts

I was diagnosed via bloodwork (TTG-G and total igA levels) and endoscopy (single sample) in July as celiac, after complaining for 6+ years about excessive bowel episodes (4-5 in a 3-4 hour span).  Bloodwork prior to 2020 was negative for celiac.  My most recent blood work shows me as non-compliant (elevated total igA, ttg-g levels), but I've replaced 99% of my kitchen (including the kitchen itself) since then.  Bowel habits have not improved.  I am not allowed to eat restaurant food, since the closest certified 100% gluten free eatery is ~160 miles away.  I'm at my wits end trying to figure out how I am being non-compliant, and getting really tired of giving up foods.  I live alone, so I don't have to worry about cross contamination from normal people food.

So I am looking for *certified* gluten free versions of the following foods, available either online or in upstate NY.  And I am aware that these foods are generally regarded as naturally gluten free, but I am getting hidden gluten from *somewhere*.  This is list the only items I can find in my pantry that I can't find certified gluten free replacements for:

  • Eggs
  • Milk
  • Drinking water (currently using municipal tap water)
  • Fresh produce (potatoes, carrots, celery, onion, lettuce, tomato)
  • Frozen produce (corn, peas, sliced peppers, strawberries)
  • Fruit juice (orange, pineapple)
  • Canned fruit (pineapple)
  • Pepsi
  • Table salt (preferably iodized)
  • Chicken
  • Steak
  • Dish detergent (currently using Dawn)
  • Dishwasher detergent (currently using Cascade)
  • Laundry detergent (currently using Era)
  • Shampoo (currently using Pantene)
  • Soap (currently using Dove and Soft Soap)
  • Toothpaste (currently using Colgate)

I haven't replaced my dish rags, dishes, cutlery, pots, or pans yet.  I bought a house right after diagnosis and thoroughly cleaned the kitchen.  My cast iron was scrubbed down to bare metal and re-seasoned after it rusted up in storage.  My grill was purchased after diagnosis and has never seen gluten.  I threw out my toaster and toaster oven. 

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


22 minutes ago, Bob Healey said:

I was diagnosed via bloodwork (TTG-G and total igA levels) and endoscopy (single sample) in July as celiac, after complaining for 6+ years about excessive bowel episodes (4-5 in a 3-4 hour span).  Bloodwork prior to 2020 was negative for celiac.  My most recent blood work shows me as non-compliant (elevated total igA, ttg-g levels), but I've replaced 99% of my kitchen (including the kitchen itself) since then.  Bowel habits have not improved.  I am not allowed to eat restaurant food, since the closest certified 100% gluten free eatery is ~160 miles away.  I'm at my wits end trying to figure out how I am being non-compliant, and getting really tired of giving up foods.  I live alone, so I don't have to worry about cross contamination from normal people food.

So I am looking for *certified* gluten free versions of the following foods, available either online or in upstate NY.  And I am aware that these foods are generally regarded as naturally gluten free, but I am getting hidden gluten from *somewhere*.  This is list the only items I can find in my pantry that I can't find certified gluten free replacements for:

  • Eggs
  • Milk
  • Drinking water (currently using municipal tap water)
  • Fresh produce (potatoes, carrots, celery, onion, lettuce, tomato)
  • Frozen produce (corn, peas, sliced peppers, strawberries)
  • Fruit juice (orange, pineapple)
  • Canned fruit (pineapple)
  • Pepsi
  • Table salt (preferably iodized)
  • Chicken
  • Steak
  • Dish detergent (currently using Dawn)
  • Dishwasher detergent (currently using Cascade)
  • Laundry detergent (currently using Era)
  • Shampoo (currently using Pantene)
  • Soap (currently using Dove and Soft Soap)
  • Toothpaste (currently using Colgate)

I haven't replaced my dish rags, dishes, cutlery, pots, or pans yet.  I bought a house right after diagnosis and thoroughly cleaned the kitchen.  My cast iron was scrubbed down to bare metal and re-seasoned after it rusted up in storage.  My grill was purchased after diagnosis and has never seen gluten.  I threw out my toaster and toaster oven. 

The vast majority of the things on your list would be naturally gluten-free and would not come in contact with gluten in production. If the chicken and steak are fresh and not breaded then cross them out too. I would be suspicious of any processed foods labeled "gluten free" that you may be using. Look for "Certified gluten-free" for any processed foods you may be using. There is a difference in the strictness of standards and testing between "gluten free" and "Certified gluten free."

Share this post


Link to post
Share on other sites
12 minutes ago, trents said:

The vast majority of the things on your list would be naturally gluten-free and would not come in contact with gluten in production. If the chicken and steak are fresh and not breaded then cross them out too. I would be suspicious of any processed foods labeled "gluten free" that you may be using. Look for "Certified gluten-free" for any processed foods you may be using. There is a difference in the strictness of standards and testing between "gluten free" and "Certified gluten free."

Here's what's currently in my pantry/fridge.  Where am I going wrong?

  • Udi's Gluten Free Hot Dog rolls
  • Udi's Gluten Free Hamburger rolls
  • Hummel Bros  Hotdogs (labeled gluten-free)
  • Barilla Gluten Free Pasta
  • Ronzoni Gluten Free Pasta
  • Ruffles Potato Chips (labeled gluten-free)
  • McCormick Garlic Powder (will be replaced with gluten-free alternative when depleted)
  • McCormick Whole Black Peppercorns (will be replaced with gluten-free alternative when depleted)
  • Morton Iodized Table Salt
  • Cabot Gluten Free Shredded Mozerella
  • Cabot Gluten Free Shredded Cheddar
  • The Cheese Guy Gluten Free Grated Parmesean
  • King Arthur Gluten FreeMeasure 4 Measure
  • King Arthur Gluten Free All Purpose Flour
  • Arrowhead Mills Organic Gluten Free Cornmeal
  • Chi Chi's Gluten Free Corn Tortillas
  • Tostitos Tortilla Chips (labeled gluten-free)
  • Crisco (labeled gluten-free)
  • Crisco Vegetable oil (labeled gluten-free)
  • Crisco non-stick cooking spray (labeled gluten-free)
  • Dole Frozen Strawberries
  • Dole canned pineapple juice
  • Price Chopper frozen corn
  • Price Chopper frozen peas
  • Stop and Shop frozen peppers
  • Stop and Shop dried oregano (will be replaced with gluten-free alternative when depleted)
  • Stop and Shop dried parsley (will be replaced with gluten-free alternative when depleted)
  • McCormick ground ginger (will be replaced with gluten-free alternative when depleted)
  • McCormick ground cinnamon (will be replaced with gluten-free alternative when depleted)
  • Granulated sugar (unknown brand, dentist has told me to phase it out due to excess cavities)
  • King Arthur Baking Sugar Alternative (gluten-free product prepared in non-gluten-free facility, got 1/4 cup left out of 1.25 cups)
  • King Arthur Gluten Free Brownie Mix
  • Carolina White Rice (labeled gluten-free)
  • Hannaford ground sweet Italian Sausage (labeled gluten-free)
  • 2 steaks (don't remember the supermarket)
  • Cesaro Ricotta (labeled gluten-free)
  • Cesaro Mozerella (labeled gluten-free)
  • Bell and Evans Gluten Free Chicken Tenders
  • Ian's Gluten Free Fish Sticks
  • Morton & Basset Gluten Free Taco Seasoning
  • Morton & Basset Gluten Free Basil
  • Morton & Basset Gluten Free Thyme
  • Land o Lakes Unsalted Butter (labeled gluten-free)
  • Land o Lakes Margarine
  • Hormel Bacon (labeled gluten-free)
  • Fricks Ham steaks (labeled gluten-free)
  • Fricks Pork Chops (labeled gluten-free)
  • Oscar Mayer Deli Roast Beef (labled gluten-free)
  • Schar Gluten Free Sourdour Bread
  • Schar Gluten Free Seeded Bread
  • Schar Gluten Free Ciabatta Rolls
  • Schar Gluten Free Baguettes
  • Udi's Gluten Free English Muffins
  • Tuttoroso Canned Tomatos (labeled gluten-free)
  • Premio Italian Sausage (labeled gluten-free)
  • Hormel sliced deli ham (labeled gluten-free)
  • Old El Paso tacos (labeled gluten-free)
  • Farmer's Market potatos
  • Chicken stock (labeled gluten-free, I forgot brand)
  • Price Chopper Ground Beef

Share this post


Link to post
Share on other sites

There are many contributors to this forum that will tell you that many products labeled "gluten free" aren't gluten free enough to prevent them from having a reaction when consumed. Apparently, the FDA standard of 20ppm is not stringent enough for some. And I note that nothing on our list is "certified gluten free" as opposed to "gluten free." 

https://www.verywellfit.com/certified-gluten-free-products-562767

It is also possible that you have refractory celiac disease.

Share this post


Link to post
Share on other sites

Hi Bob,

Are your antibody levels lower than when you were first tested?  If they are trending downward then you are doing something right.  If they are going up then it's a problem.

As Trents said, many of the items in your suspect list are naturally gluten-free.  Things like veggies could pick up contamination on their surface but it is easy to rinse them off with water just in case.

Around here we shoot people that try to put gluten in the water.  So far we haven't shot anyone though.  Seems that's a pretty rare thing.  Maybe non-existent, like bigfoot! :)

There are some flavored teas that contain barley malt flavoring.  They should have that listed as an ingredient though.

You are fairly new to the gluten-free diet.  It can take 1.5 to 2 years for gut healing/recovery.  Time moves slowly for those suffering it seems.  Regarding giving up foods.  Giving up foods on a temporary basis like in an elimination diet is a good troubleshooting tool for a celiac.  For some people dropping back to a very few foods like 4 or 5 and building from there is best.  The trick to understand is that some non-gluten foods can cause symptoms also, especially early in the healing process.  People may have to give up dairy and oats at first but some can resume them later.  Other random foods may also be problems but after healing may be ok.

Whole foods with 1 ingredient are safest.  Foods like meats, veggies, eggs, nuts, and fruit.  Over time you can try adding foods back in slowly to see how they work.  We have many forum members with varying food intolerances.

The gluten-free diet is definitely a steep learning curve for many people.

 

 


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

Because of damage to the small bowel villi and resultant "leaky gut syndrome," Celiacs often develop allergies/intolerances to non gluten foods. Allergies/intolerances to dairy and soy are very common but it can be almost anything, like corn, for instance. But since you are still producing celiac antibodies it would seem you are getting gluten from cross contamination or even refractory disease.

Edited by trents

Share this post


Link to post
Share on other sites
16 minutes ago, GFinDC said:

Hi Bob,

Are your antibody levels lower than when you were first tested?  If they are trending downward then you are doing something right.  If they are going up then it's a problem.

As Trents said, many of the items in your suspect list are naturally gluten-free.  Things like veggies could pick up contamination on their surface but it is easy to rinse them off with water just in case.

Around here we shoot people that try to put gluten in the water.  So far we haven't shot anyone though.  Seems that's a pretty rare thing.  Maybe non-existent, like bigfoot! :)

There are some flavored teas that contain barley malt flavoring.  They should have that listed as an ingredient though.

You are fairly new to the gluten-free diet.  It can take 1.5 to 2 years for gut healing/recovery.  Time moves slowly for those suffering it seems.  Regarding giving up foods.  Giving up foods on a temporary basis like in an elimination diet is a good troubleshooting tool for a celiac.  For some people dropping back to a very few foods like 4 or 5 and building from there is best.  The trick to understand is that some non-gluten foods can cause symptoms also, especially early in the healing process.  People may have to give up dairy and oats at first but some can resume them later.  Other random foods may also be problems but after healing may be ok.

Whole foods with 1 ingredient are safest.  Foods like meats, veggies, eggs, nuts, and fruit.  Over time you can try adding foods back in slowly to see how they work.  We have many forum members with varying food intolerances.

The gluten-free diet is definitely a steep learning curve for many people.

 

 

The biggest frustration is my only symptom is frequent bowel movements.  I had been tested several times over the last few years, and until 2020, there were no indications I was celiac.  In fact, Xifaxen cleared me up for 2 months.  But because of this diagnosis, I can't ever travel again, I can never eat food I have not personally prepared myself, in my own kitchen, unless it is on the supermarket shelf labeled as gluten free.  Deamidated Gliadin Abs, IgA and Deamidated Gliadin Abs, IgB, t-Transglutaminase (tTG) IgA have never show postive results, only t-Transglutaminase (tTG) IgG and Immunoglobulin A, Qn, Serum show high, and I am still stuck on the throne every 3 meals.  I've dropped 50lbs since March because I've stopped eating meals during the work day so I can make it to the end of the day.  Nothing's changed from when I was eating real bread 2-3 times a day to now, not even with anti-inflamatories.  To top it off, I broke a tooth this fall, and got put on a no sugar diet as a result.  And my doctors aren't willing to discuss things until I can prove compliance with a gluten free diet.

Edited by Bob Healey
More details

Share this post


Link to post
Share on other sites

Hi Bob.  Fellow "newbie" here (dx in fall 2019), gluten-free since March 2020.  It looks like you are taking the right steps to boost your awareness, shop wisely, and facilitate your healing.  I share your frustration with continued symptoms, inability to get clear diagnosis years earlier, and continued GI distress despite your best efforts.   The good news is your G antibody numbers should begin to rapidly decline once you are truly on a strict gluten-free diet.  But be patient for the GI healing as it can take a few months to a year or so to completely heal your body.

A couple of thoughts/friendly suggestions, based on my limited experience over the past year:

Your food lists contains MANY packaged foods, "junk foods" (soda, chips, heavy sugar/salt preservatives for example) and dairy.  Soda and dairy are HUGE gut irritants for me after I was diagnosed.  Unfortunately, not unusual for other food allergies kick in once the body suddenly and loudly revolts against gluten.  They often lessen or disappear once you establish a solid gluten-free diet and your body has a chance to heal.  I would suggest dropping the junk and trying a 100% natural, non-dairy food diet (unprocessed/seasoned meats, veggies, fruits) for a few weeks/months to see if your digestion begins to heal and you feel a bit better.  I'm very rigid with my diet (avoid even gluten-free-labeled items) but IMO even many gluten-free-labeled foods cannot be trusted because they may be cross-contaminated during the harvesting, packaging process and, in the US, food companies are largely left to an "honor system" re: label claims and ingredients.   Nuts and oats are classic examples of easily CC foods.  

If you try changing your diet, and no relief after a few months, consider other factors including IBS/SIBO, extreme stress, insomnia.  Speaking from personal experience, my increased stress/insomnia, esp. since this pandemic/shutdown, have intensified my GI problems and other symptoms.  Make sure you are giving your mind as well as your gut the TLC it needs to heal.

Speaking of stress (and I mean this kindly, dear Trents):  it is neither accurate, responsible, nor helpful (esp. to so many newly-diagnosed/confused folks, learning the ropes of the gluten-free diet for a very short time, only a few months) to post speculative comments about "refractory celiac disease"--however well-meaning.  Struggling with chronic autoimmune problems, getting a new diagnosis of celiac disease, and having to radically change one's diet/lifestyle (all while coping with life in a terrible pandemic) are daunting enough challenges in life.   Telling a new patient he is possibly "refractory" BEFORE he even has a reasonable chance to heal or have follow-up care, tests is very alarming/depressing.   That is a diagnosis only a GI doctor can and should confirm.  We should encourage each other and give each other hope!   

 

Share this post


Link to post
Share on other sites

Udi's Gluten Free Hot Dog rolls

Udi's Gluten Free Hamburger rolls

 

i wouldn't trust these..

you need to stop eating all packaged food..  especially the "gluten free" junk food...

the only "packaged" food i've been eating since being diagnosed in June is: 

Bryers vanilla ice cream / lactose free / Gluten free

Greek Yogurt / certified gluten free

Lara Bars.. only 3 ingredients..

Late July certified gluten free potato chips.. only 3 ingredients..

I had my antibody levels checked last month for the first time...   they dropped from over 100+ to 13...

I think its just not long enough yet for it to have hit 0 or within normal range...  or maybe I got a little contamination along the way.. 

I did eat out 4 times at Dedicated gluten free places... but i don't even do that anymore...

Share this post


Link to post
Share on other sites

Just eat fresh meats, fish, vegetables, fruits, sweat potatoes..

and only "certified gluten free" products...

your days of eating packaged easy to heat up junk food are over.

The odds that you are still getting gluten are very high considering what you're eating there...  the odds of anything else is very low..

My Dr said that 95% of people with celiac respond good on the Gluten free diet. 

Share this post


Link to post
Share on other sites

You might try the Gluten Contamination Elimination Diet, also called the Fasano diet, for a few months.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Also, to help with bowel troubles, you might want to give up milk and milk products.  When villi are damaged they don’t make the enzyme lactase, so milk sugars aren’t digested and can cause diarrhea.

I wouldn’t totally give up on eating out or eating food you haven’t prepared yet.  First figure out what is still causing your problems and go from there.

Share this post


Link to post
Share on other sites
2 minutes ago, RMJ said:

You might try the Gluten Contamination Elimination Diet, also called the Fasano diet, for a few months.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Also, to help with bowel troubles, you might want to give up milk and milk products.  When villi are damaged they don’t make the enzyme lactase, so milk sugars aren’t digested and can cause diarrhea.

I wouldn’t totally give up on eating out or eating food you haven’t prepared yet.  First figure out what is still causing your problems and go from there.

I am not allowed to eat out unless it is a certified gluten free kitchen and bar - doctor's orders.  I was treated for SIBO in 2019, and it solved my problems for about 3 months.  I also went lactose free under doctor supervision in 2019 for a few months, and nothing changed.  With the hours I work, seeing some heat and eat sold as gluten free was good for the nights I get home after 12 hours at work and didn't want to spend another hour or two cooking.  Same with the off the shelf bread/tortillas.  I'll toss/donate all the corn/rice/processed "gluten free" stuff this week.

Share this post


Link to post
Share on other sites
55 minutes ago, Bob Healey said:

I am not allowed to eat out unless it is a certified gluten free kitchen and bar - doctor's orders.

I'm pretty new to this gluten-free game but but I've never heard of "certified gluten free" restaurants or other food establishments.  However, many restaurants do advertise "gluten-free menus" or individual gluten-free items on their regular food menus (and/or websites).  Most restaurant workers--high school and college kids--lack a basic understanding of celiac disease and all the nuances of truly gluten-free food content and prep practices required to keep celiac disease patients safe (they think gluten-free just means not serving bread ingredients, buns for example).  They have no idea that gluten comes in so many food forms, often hidden (soup thickeners for example).  Also, space and time are in short supply in restaurants, esp. during hectic lunch and dinner hours.  I used to work in a restaurant and we barely had time to keep track of rushed orders, let alone take time to double-check ingredients/orders or worry about avoiding gluten exposure.   And we were crammed into tight spaces requiring shared cutting boards, grills etc.

Also, very few facilities use separate grills, fryers so even fries or a burger without a bun or fries are very likely CC when prepped on the same grill, fryers as fries and burgers with buns; and a completely gluten-free salad could be accidentally mixed with crouton crumbs from a previous order.  So, personally, I wouldn't trust any gluten-free (or certified gluten-free) claim made by restaurant owners or carryout managers, cooks or staff.  Safer to just skip eating out altogether (even carryout) during the initial months when you are trying to master gluten-free eating and heal your gut.   

I know this level of constant food paranoia (CC issues) really stinks, but better safe than sorry. When I was first diagnosed, I wasn't too concerned as I assumed all gluten-free eating required of me was avoiding OBVIOUS sources of gluten (bread, donuts, pizza made with wheat, rye, etc.).  As time went by, I realized how hard it really is (and how vigilant I must be) to master the art of gluten-free eating/living.  But it is what it is....:(.  Hopefully, all this focused, funded research on CV will help facilitate and inspire a quicker cure/vaccine for other health challenges like celiac disease and other AI diseases.

Share this post


Link to post
Share on other sites
1 hour ago, Bob Healey said:

It sounds like the only way I can be in compliance is to buy a literal farm, and not eat anything I do not grow myself, since I can't trust gluten-free labels.

That's a sweet idea...

But, not necessary really.  I live with my brothers who are not gluten-free and do ok.  We do live on a farm but it's not a totally gluten-free farm.  So you can get better without living in the country IMHO.  But why would you want to? :)

OK, maybe some simple changes can help.  When you cook make large batches of food and freeze half or more.  Doing this once a week you will soon have a freezer full of home cooked foods you can heat and eat.  If you want to get fancy you can print out labels with lovely pictures of cooked food and stick on the frozen food like factories do.

When you make large batches of food try to leave the spices out.  You can always add spices when reheating the food.  This is helpful in case you discover you are reacting to one of the spices you are eating.  You don't want to make a whole big batch of food and find out it isn't edible.

Your digestion will probably improve if you remove all dairy and oats from your diet for a few months.  You can also try taking psyillium husks for fiber which may help.

A simple diet is safer for healing.  Simple means no or very little processed foods.  I don't suggest throwing out the foods you have though.  They may be fine once you are healed better.  Plus it can be helpful to add one new food a week and check reactions.  If you already have suspect foods, keep them and try them later to test.  It's better to know than to guess.  A test can be a small amount of a suspect food added into you diet for 3 days running.  There's no point trying this test process until your GI system is stable though.  Perhaps in 3 months it will be stable

An elimination diet is our best tool to troubleshoot food problems.  And it doesn't need a doctor or medicines or anything but some determination and patience.

Some things that might help your digestion are Betaine HCL, Pepto Bismol (may not be available there), and peppermint tea or peppermint Altoids.

Probiotics may help some.  But it seems some of them are grown on dairy so may be contaminated with it.  Sauerkraut and coconut yogurt are a couple that should be ok.

If you can pack some food for lunch like fruit, nuts or boiled eggs that might be good.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

Good advice, Kate, about the excessive amount of processed food products the OP is using.

Your admonishment about using the term "refractory" when responding to a newbie post is well-taken but my concern was that after making a serious attempt to eat gluten-free for five months there should have been some improvement in symptoms and blood work. Correct, it does take time for full healing to take place but it seems there has been no progress.

But Bob, let's have some clarification. It's been approximately five months since your diagnosis. Did you plug into the gluten-free eating habits you describe from the get go following diagnosis or has the list of food items you provided been a more recent regimen? Also, how recently was the follow-up blood test done?

Share this post


Link to post
Share on other sites
41 minutes ago, trents said:

Good advice, Kate, about the excessive amount of processed food products the OP is using.

Your admonishment about using the term "refractory" when responding to a newbie post is well-taken but my concern was that after making a serious attempt to eat gluten-free for five months there should have been some improvement in symptoms and blood work. Correct, it does take time for full healing to take place but it seems there has been no progress.

But Bob, let's have some clarification. It's been approximately five months since your diagnosis. Did you plug into the gluten-free eating habits you describe from the get go following diagnosis or has the list of food items you provided been a more recent regimen? Also, how recently was the follow-up blood test done?

I was diagnosed officially 7/28.  I was told  I could finish my open bread/etc before going completely gluten free.  I closed on a house 8/3 and made the decision that no gluten would ever enter it.  By 9/1 I was fully gluten free, having had to get regular take out during the move due to lack of suitable food supplies/unpacked kitchen equipment.  During the move, my mother confiscated all flour, bread, gluten containing foods, sugar, and storage containers and replaced the storage containers with brand new ones.  From 10/13 till 11/10 I was on a very restricted diet that was pretty much just scrambled eggs, mashed potatoes, broth, and ice cream (locally made, vendor claimed gluten free), due to tooth decay from lack of proper dental care.   I've been trying to keep a balance of fresh foods vs the prepared stuff, but since I've gotten the lab results, I've been trying to make sure everything is labeled gluten free, which has resulted in less and less fresh stuff.  I've never had a reaction to a specific food, only extremely oily foods, or large quantities of food.  I've never had any of what would be described as the classic symptoms of celiac, in fact, until the lockdowns in the spring, my weight had been steadily increasing by ~10lbs/year to the point I was 230lbs with a BMI of 30 last December, and diagnosed as obese.  I lost ~20 lbs just cooking smaller portions for myself instead of eating in the work cafeteria twice a day, and another 30lbs since going gluten free.  As I went gluten free, the length of time I could go between bad bowel days decreased to daily, and I stopped eating meals to compensate.

5/16/2019:

  • Deamidated Gliadin Abs, IgA: 5
  • Deamidated Gliadin Abs, IgG: 7
  • t-Transglutaminase (tTG) IgA: 2
  • t-Transglutaminase (tTG) IgG: <2
  • Endomysial Antibody IgA: Negative
  • Immunoglobulin A, Qn, Serum: 409

3/10/20:

  • Endomysial Antibody IgA: Negative
  • t-Transglutaminase (tTG) IgA:  <2
  • Immunoglobulin A, Qn, Serum: 415
  • t-Transglutaminase (tTG) IgG: 15

11/23/20:

  • Deamidated Gliadin Abs, IgA: 5
  • Deamidated Gliadin Abs, IgG:  5
  • t-Transglutaminase (tTG) IgA: <2
  • t-Transglutaminase (tTG) IgG: 13
  • Endomysial Antibody IgA: Negative
  • Immunoglobulin A, Qn, Serum: 417

Biopsy (single specimen):

  • Small bowel mucosa with patchy villous blunting and increased lymphoplasmacytosis in the lamina propria suggestive of gluten sensitive enteropathy/celiac disease. Recommend correlation with serology

Share this post


Link to post
Share on other sites

Your tTG has remained low and it is the most sensitive marker for celiac disease.

But I'm confused. Your first testing was done in May of 2019 but you were not officially diagnosed until late July of 2020? Is this correct? When was the biopsy done?

So you have been gluten-free for about four months, correct?

Is frequent bowel movements the only symptom you have?

Share this post


Link to post
Share on other sites

Fresh fruits and vegetables are considered safe, they don’t need to be labeled as gluten free. Just wash them thoroughly, especially during COVID times!

Share this post


Link to post
Share on other sites
27 minutes ago, trents said:

Your tTG has remained low and it is the most sensitive marker for celiac disease.

But I'm confused. Your first testing was done in May of 2019 but you were not officially diagnosed until late July of 2020? Is this correct? When was the biopsy done?

So you have been gluten-free for about four months, correct?

Is frequent bowel movements the only symptom you have?

Colonoscopy was done 3/2014 and 3/2020.  Endoscopy/bioposy was done 7/15/2020.  Frequent (every 30-40 minutes over a 4-5 hour span) was the complaint. I've been living with it since 2013/2014.  I didn't know the celiac panel was done by my PCP in 2019 until I was getting covid results from Labcorp for work.  The 3/2020 and 11/2020 were ordered by the GI doctor.  I am currently on budesinide (since 11/25/2020), and have not noticed any changes, but how frequently I have bad days ebbs and flows.  Over a calendar month, since 11/1/2019 when I started tracking, I average between 1.5 and 2.5 bowel movements per day across the entire month.  This month's currently 1.7.

Share this post


Link to post
Share on other sites

1-2 BMs per day is not abnormal, at least for people getting plenty of fiber as long as the volume each time is not excessive or, on the other hand, is of diarrhea consistency. Budesinide is usually given for Crohns or IBS and is an immune system suppressant. You say the medication hasn't helped? If I am following the chronology correctly, it sounds like the bowel issue predates the time that you developed celiac disease, at least as demonstrated by the testing.

Share this post


Link to post
Share on other sites
1 minute ago, trents said:

1-2 BMs per day is not abnormal, at least for people getting plenty of fiber as long as the volume each time is not excessive or, on the other hand, is of diarrhea consistency. Budesinide is usually given for Crohns or IBS and is an immune system suppressant. You say the medication hasn't helped? If I am following the chronology correctly, it sounds like the bowel issue predates the time that you developed celiac disease, at least as demonstrated by the testing.

Typically, its 4-5 ~40 minutes apart, then 1-2 days of quiet, then repeat.  Since I wrote that response, the daily average for Dec 2020 is now 1.8.  The medication hasn't had a noticeable effect.  I can't tell if I'm having a good month, or if its actually helped.   Given this is my 3rd or 4th bad day so far this month, I'm thinking no.  And if I had known it was an immunosurpressant, I probably would have refused until this area got covid more under control since I have to interact with people at work.  They tested me for celiac after the SIBO treatment wore off December 2019.  My medical team isn't willing to talk to me about other reasons why I am having bowel issues (spending 4-5 hours in the bathroom is *not* normal) until I can prove beyond a shadow of a doubt I am being compliant with a gluten free diet and that every food I am eating is provably gluten free, both of natural gluten and cross contamination.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
7 7