Follow up Labs did not go as hoped... looking for some encouragement/insight/support!

[GlutenFreeFrizz]

Hi everyone- so I joined this group last night after getting a note from my doctor following some bloodwork. My husband and I are just... completely baffled and I'm hoping maybe the kind folks here can offer us some insights!

Quick background on me: I was diagnosed with Celiac in January 2021- my TTG levels were so high (121) they told me I had Celiac before they did the endoscopy. I've been (what I thought was) meticulously gluten free for 18 months since! My husband and I gutted our kitchen after the official confirmation, there's nothing in our fridge or pantries that isn't either certified gluten free or "no gluten containing ingredients." We rely heavily on apps such as Gluten Scanner in the grocery store and Find Me Gluten Free on the very rare occasion we go out to eat now. I extensively meal prep when we travel, including cooking all my own food at my in-laws and other relatives' homes before visiting, all of whom (with the exception of my in-laws) meticulously clean, sanitize, and prep their kitchens for my arrival. My husband, that darling man, has been SO supportive all this time: he also has gone 99% gluten free (minus the occasional foray into the North End for some decent Alfredo, which hey, I get it!) and he checks everything he buys to make sure it's safe for me.  Point is- we're careful to the point of it being almost annoying/comical to the people in our lives!

 

Backstory over- let's get to the point. I got some follow-up bloodwork done this past weekend and my doctor just reached out to me with the bad news. My TTG is 72. It's way lower than it was, but in her words, this means "the Celiac is not under optimal control." Not only that, I had to drop over a hundred bucks on vitamins yesterday, because labs also show my Iron, B12, and D3 levels are deficient. I am so frustrated and discouraged. We tore our kitchen apart yesterday evening until almost 10pm trying to find something, ANYTHING that might have traces of gluten in it. We came up completely empty-handed. My poor husband was even googling the ingredients in my LIPSTICKS last night to try and get an answer (ps I do know lipsticks can be a culprit but I haven't touched my makeup case since the pandemic- never really wore it much before anyways!).  We have no ideas. We are completely at a loss over here.

 

I was so angry and discouraged last night. I didn't want to be "living in fear," hiding in my own kitchen, never traveling or eating out anywhere ever again... I've already started to feel that "Celiac isolation" at family events, had to skip plans and meals and get togethers because planning where I could safely eat was derailing the whole group. Realizing we aren't being careful enough (which, much as I hate to admit it, you can't argue with the labs... we aren't...) is just... awful.

So, here I am to turn to you kind folks. Please, help us figure this out! I'll answer any questions and take any suggestions at this point!

[Wheatwacked]

Welcome to the forum. Sorry to hear your troubles but this is the right place for you. I recently found an article from 2013 specifically geared to your concerns. It has a list of foods to stick to in order to ensure a gluten free diet while your gut heals.

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Your investment in vitamins is not wasted. Our Standard American Diet is full of high omega 6, an inflammatory, and low in vitamins and minerals. Grain products are fortified because the nutrients are removed in the milling process, so a gluten free diet will be deficient in those fortifications unless you realign your diet to expressly include them. Especially potassium, choline, D, folate. Celiac Disease is a disease of malabsorption from the small intestine meaning some 20 vitamins and minerals are at risk. The B vitamins are the most commonly recognized. It is dependant on what you eat as to what you are deficient in. 

to help with your isolation give this a read: 

 

 

[trents]

Are you still consuming oats (even gluten free oats)?

Are you still consuming dairy? 

Are you still consuming processed meats (things that use "meat glue")?

[GlutenFreeFrizz]

2 hours ago, Wheatwacked said:

Welcome to the forum. Sorry to hear your troubles but this is the right place for you. I recently found an article from 2013 specifically geared to your concerns. It has a list of foods to stick to in order to ensure a gluten free diet while your gut heals.

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Your investment in vitamins is not wasted. Our Standard American Diet is full of high omega 6, an inflammatory, and low in vitamins and minerals. Grain products are fortified because the nutrients are removed in the milling process, so a gluten free diet will be deficient in those fortifications unless you realign your diet to expressly include them. Especially potassium, choline, D, folate. Celiac Disease is a disease of malabsorption from the small intestine meaning some 20 vitamins and minerals are at risk. The B vitamins are the most commonly recognized. It is dependant on what you eat as to what you are deficient in. 

to help with your isolation give this a read: 

 

 

Thank you so much for these resources! I'll absolutely give them a read. My husband and I plan to sit down and do a serious overhaul of our kitchen and some deep thinking on our approach to the diet thus far- these will go a long way to helping with that

[GlutenFreeFrizz]

1 hour ago, trents said:

Are you still consuming oats (even gluten free oats)?

Are you still consuming dairy? 

Are you still consuming processed meats (things that use "meat glue")?

I do consume oats, though I've always been careful to buy the certified gluten free variety. The only "real" dairy product I still consume is cheese at this point, and always with a dose of Lactaid. We've made the switch to Lactaid Sour Cream and Milk in our household, both of which are labeled Gluten Free. However, I think you have a point on the processed meats- I do buy brand-name gluten free ground sausage but we buy grocery-store brand ground beef. Though we've checked the ingredients before it seems we may be missing something.

 

Interestingly enough, a fellow Celiac just weighed in on my post in the Celiac subreddit, telling me that many products that are labeled gluten-free still test high for gluten! Here's the comment: 

"About one third of "no-gluten ingredients" products such as nuts, chocolate, dried fruit, peanut butter, beans, spices, grains, frozen vegetables, deli meat, salad dressing, broth, pasta sauce, etc. test as high in gluten. I only buy stuff like gluten-free rice and meat from a gluten-free butcher... In a massive test of gluten-free foods 5% of foods certified gluten-free tested at over 20 ppm gluten. The key IMHO is natural whole foods and a minimum of processed foods even if they are labeled gluten-free. 500 g of food a day at 20 ppm is likely to cause intestinal damage in the vast majority of celiacs.... It isn't easy. In studies it seems only 20% of celiacs are on an effective gluten-free diet and in a small study 70% percent of celiacs who claimed to never get cross-contaminated had gluten in their stool and active intestinal lesions whenever they were tested."

What are the thoughts about this in this community? If they are correct, that could be where my elevated levels are coming from?

 

[cristiana]

Hi GFF

I've been there and totally commiserate.  It took until a few months ago for my numbers to get to 9 (my lab's limit is 10).  It was a slow and frustrating journey that lasted many years - you will see from my signature I went gluten free in 2013!  Looking back, I think I can only put this down to perhaps accidental cross-contamination (I share a kitchen), taking a supplement that had gluten in it by mistake for a while and using a dodgy old dishwasher that really didn't rinse properly. 

In every other respect  I was much more strict than my friends who were diagnosed around the same time as me.  I even stopped eating out while they carried on.

My gastroenterologist did an endoscopy a few years ago when my numbers were still in the 40s but I was reassured in that I was at Marsh scale 1, a great improvement from my first endoscopy.

I was so fed up about my high numbers but he told me that as far as he was concerned he was glad the numbers kept coming down and that was the important thing.

So, nearly nine years later my numbers are normal.  I did get there in the end!  I possibly hold the record on this forum for taking so long.  For what it is worth, I think you sound like you are doing very well, I am sure your figures will be much lower next time you test. 🙂

Cristiana

 

 

Edited July 8, 2022 by cristiana

[trents]

The problem with oats is not necessarily cross contamination with wheat. For some celiacs, it is the oat protein avenin which closely resembles gluten.

As far as dairy goes, everyone assumes the issue is lactose intolerance. And it often is. But for some celiacs, the dairy protein casein is the problem as it can mimic the effect of gluten and can damage villi.

Processed meats that are chopped and formed, use "meat glue" which for some celiacs also mimics gluten: 

 

[trents]

Also, it generally takes around two years for complete healing of the villi once going gluten free. If you are experiencing consistent cross-contamination then it keeps the fires smoldering. What about pills and supplements? Have you checked all those pills to make sure none of them contain wheat starch as a filler?

[trents]

 

[GlutenFreeFrizz]

25 minutes ago, cristiana said:

Hi GFF

I've been there and totally commiserate.  It took until a few months ago for my numbers to get to 9 (my lab's limit is 10).  It was a slow and frustrating journey that lasted many years - you will see from my signature I went gluten free in 2013!  Looking back, I think I can only put this down to perhaps accidental cross-contamination (I share a kitchen), taking a supplement that had gluten in it by mistake for a while and using a dodgy old dishwasher that really didn't rinse properly. 

In every other respect  I was much more strict than my friends who were diagnosed around the same time as me.  I even stopped eating out while they carried on.

My gastroenterologist did an endoscopy a few years ago when my numbers were still in the 40s but I was reassured in that I was at Marsh scale 1, a great improvement from my first endoscopy.

I was so fed up about my high numbers but he told me that as far as he was concerned he was glad the numbers kept coming down and that was the important thing.

So, nearly nine years later my numbers are normal.  I did get there in the end!  I possibly hold the record on this forum for taking so long.  For what it is worth, I think you sound like you are doing very well, I am sure your figures will be much lower next time you test. 🙂

Cristiana

 

 

Thank you Cristiana! It's so encouraging to hear stories like yours at this stage- sometimes it feels like it's just one thing after another the first few years after your diagnosis. 

24 minutes ago, trents said:

The problem with oats is not necessarily cross contamination with wheat. For some celiacs, it is the oat protein avenin which closely resembles gluten.

As far as dairy goes, everyone assumes the issue is lactose intolerance. And it often is. But for some celiacs, the dairy protein casein is the problem as it can mimic the effect of gluten and can damage villi.

Processed meats that are chopped and formed, use "meat glue" which for some celiacs also mimics gluten: 

 

Oh that's interesting, I didn't know that about the avenue or the "meat glue" until I started reading these comments today. Thank you for the resources, I'll be sure to give them a read! 

[GlutenFreeFrizz]

23 minutes ago, trents said:

Also, it generally takes around two years for complete healing of the villi once going gluten free. If you are experiencing consistent cross-contamination then it keeps the fires smoldering. What about pills and supplements? Have you checked all those pills to make sure none of them contain wheat starch as a filler?

 

I am skeptical of our ibuprofen, which we've had for awhile and may have slipped through our initial sweep. All vitamins and supplements purchased in the last 18 months are gluten free, I made sure to check those! 

[trents]

2 hours ago, GlutenFreeFrizz said:

Thank you Cristiana! It's so encouraging to hear stories like yours at this stage- sometimes it feels like it's just one thing after another the first few years after your diagnosis. 

Oh that's interesting, I didn't know that about the avenue or the "meat glue" until I started reading these comments today. Thank you for the resources, I'll be sure to give them a read! 

avenue? Actually, it is "avenin".

Edited July 8, 2022 by trents

[RMJ]

It took 6 years for one of my celiac antibodies (DGP IgA) to come down into the normal range.

At first I just read labels and if purchasing processed foods avoided those with gluten-containing ingredients. Antibody levels were lower but still high. Then I switched to processed foods actually labeled gluten free. Antibody levels still lower, but still high.  Now if I buy processed foods I mainly buy those that are certified gluten free, with a few just labeled gluten free from companies that I really trust. 

I second the ideas to eliminate oats completely for a while, in case you’re one of those who reacts to the avenin protein, and to try the “Fasano Diet” described in the paper in Wheatwacked’s response. Perhaps if trying one or both of those ideas your doctor would be willing to retest you in 3-6 months to see if it is helping? I don’t have obvious symptoms, so I find once a year testing is not enough to tell me how I’m doing with the gluten free diet.

[GlutenFreeFrizz]

5 hours ago, trents said:

avenue? Actually, it is "avenin".

Whoops! My computer is a big fan of auto-correcting as I type. My apologies!

[GlutenFreeFrizz]

3 hours ago, RMJ said:

It took 6 years for one of my celiac antibodies (DGP IgA) to come down into the normal range.

At first I just read labels and if purchasing processed foods avoided those with gluten-containing ingredients. Antibody levels were lower but still high. Then I switched to processed foods actually labeled gluten free. Antibody levels still lower, but still high.  Now if I buy processed foods I mainly buy those that are certified gluten free, with a few just labeled gluten free from companies that I really trust. 

I second the ideas to eliminate oats completely for a while, in case you’re one of those who reacts to the avenin protein, and to try the “Fasano Diet” described in the paper in Wheatwacked’s response. Perhaps if trying one or both of those ideas your doctor would be willing to retest you in 3-6 months to see if it is helping? I don’t have obvious symptoms, so I find once a year testing is not enough to tell me how I’m doing with the gluten free diet.

I'll absolutely have to look into the Fasano Diet, and check with my doctor. I do eat a decent amount of oatmeal, especially in the mornings before school (school teacher: quick and easy to make on the stove before heading out!). Everyone has given me so much to think about, I sincerely appreciate it!

[LH7]

Hi @GlutenFreeFrizz, your case reminded me at some points mine, i'm also still struggling to lower my ttg iga levels. I will come to you to read my report for those who know to have some ideas.

 

[GlutenFreeFrizz]

Oh goodness I'm so sorry, I was away from this forum for some time and only just saw this!The irony of this entire situation- I'm STILL waiting to consult with my GI on my results so I still have no idea medically what to think. My GI is waitlisted through JANUARY currently. Ugh. Hopefully I get some news soon!

[Wheatwacked]

Part of the recovery process is rebuilding a healthy gut biome.

For fiber that is benificial to the good gut bacteria I have started taking Inulin. The nice thing about oatmeal is its high fiber content. Quaker gluten-free Instant for example per 100 grams, 3 1/2 ounces, has 357 calories, 68 carbs and 14 grams of fiber and no sugar.  As Dr Haas figured out a century ago, children with Celiac Disease have a problem with carbs, that's why he feeds ripe bananas, easy to digest. But our western diet is high in carbs low in fiber. A teaspoon of inulin ( 5 grams) has 5 calories, 3 grams of carbs all of which is fiber. Three teaspoons a day supples the same fiber as 100 grams of oatmeal but without the extra carbs, calories and sugar.

Of course all 40 essential vitamins and minerals are important. Each has a role in our health.

While waiting for the GI get plenty of vitamin D to increase your vitamin D plasma quickly to 80 ng/ml. Get a bottle of 10,000 IU take one a day and get your D and PTH checked near the end of the bottle. " Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years.   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

 Possible Role of Vitamin D in Celiac Disease Onset

Eat plenty of choline containing foods and or supplements, It is essential for digesting fats. The rda for choline is 3 eggs, or 15 ounce lean beef, or 10 cups of cooked brocolli every day. Low choline levels in pregnant women raise babies' risk for brain and spinal-cord defects, study shows; 

 CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

 

 

Quote

Inulin Prebiotic FOS Powder provides nutritional support that feeds healthy probiotics. When we ingest FOS (fructooligosaccharides), it is not digested by our bodies, but rather feeds the good bacteria that naturally colonize the digestive tract.  https://www.pipingrock.com/inulin/inulin-prebiotic-fos-powder-organic-15-oz-425-g-bottle-39421

 

[Wheatwacked]

Taking a break from my front yard makeover, here is some real numbers.

In April of 2015 I started taking 10,000 IU vitamim D3 after finding numerous studies on kidney transplant patients who had been given doses ranging from 1000 iu a day to 1.25 million IU in a single dose and tracked for a year. The outcomes were all similar, no effect on the transplants but the higher dose patients seemed to generally feel better. Logic would say do not enhance the immune system in a transplant patient but in the case of vitamin D logic is apparently wrong.

I had fasting labs done recently so three weeks before I stopped all vitamins. Since 2020 my plasma D has been stable at 80 ng/ml taking 10,000 IU a day (thats 250 mcg per day in metric. At the same time I began working in the yard several hours a day, without sunscreen, theoretically sufficient to support vitamin D level.. So after 3 weeks the blood was drawn. My vitamin D level dropped to 72 ng/ml in only 21 days.. I have several "tells" I use for my mood  (uncluttered horizontal surfaces and annoyance level at phone calls) and they were getting worse without the D. My doctor agreed I should resume taking the 10,000 IU a day.

[Rogol72]

The relationship between Vitamin D levels, Fish Oil and mood is interesting. Came across these which explain it very nicely .... 

https://www.integrativepsychiatry.net/vitamin-d-and-fish-oil-improve-cognition-and-mood-by-supporting-serotonin/

https://www.brain-effect.com/en/magazin/boost-serotonin-levels

It's good to know how and why micronutrient levels effect the Coeliac body and brain.

[Wheatwacked]

Omega 3 oils work because they counteract the estimated up to 20:1 omega 6: omega 3 ratio inherant in the standard american diet. Optimum is said to be less than 3:1.

"The typical American diet tends to contain 14 to 25 times more omega-6 fatty acids than omega-3 fatty acids."   Omega-6 fatty acids: Icahn School of Medicine at Mount Sinai