Confirmed celiac disease - After GFD I have marsh 0 with positive serology and symptoms

[LH7]

Hello everyone. I started following the forum a few months ago, now I come to make my first post to briefly report my case and also to share some experiences I had. (Sorry for any grammatical errors)
At the beginning of last year I started to feel some abdominal discomfort (it's not pain, but abdominal swelling). I went to the gastroenteorologist and had a general checkup, nothing out of the ordinary except for one test: my tTg-IgA was 129 (positive >30 *after I switched labs).
From then on, I did the IgA-EmA test, which was also positive, along with an endoscopy confirming celiac disease with Marsh 3a (I was diagnosed with mild reflux and moderate peptic duodenitis).
Living in a house with other people who consume gluten, I cut out everything that would make me have contact with the protein, at least from what I could think of. My symptoms intensified, and although I never had diarrhea or pain, I had a lot of reflux and abdominal bloating that sometimes prevented me from sleeping (PPI meds weren't helping enough). After some time I did another tTg-IgA test with a result of 80 (negative: <7 / indeterminate: between 7 and 10 / positive: >10) and IgA-EmA with a negative result.
After 6 months in this state I had another endoscopy (still positive tTg-IgA at 80), this time the endoscopy showed that my bowel was healed (Marsh 0), however I was still diagnosed with moderate reflux and moderate peptic duodenitis. As I was feeling very ill, I started to intensify my care and review all the less obvious sources of gluten: I started taking tTg-IgA tests every 15 days to assess whether my measures were being effective, I reviewed ingredients in all hygiene products, I cut out some foods that were at risk of cross-contamination and stopped touching places that people in my household might have touched.
After a lot of searching, I discovered that the cleaning lady was washing the water kettle with the same sponge that the people here use on gluten-containing utensils (the kettle was the only thing she shared with them). Well, after correcting this problem I realized that the value of my tTg-IgA exam was reduced by 20 "units" every 15 days.
However, tTg-IgA stopped decreasing and stabilized at 20 (negative: <7 / indeterminate: between 7 and 10 / positive: >10). At this point, my symptoms have decreased A LOT and I can sleep well, but I still had symptoms that bothered me considerably on a daily basis (reflux and abdominal swelling and rarely changes in intestinal transit).
After that, my tTg-IgA test never went below 20, I tried everything I could think of. To put my situation in context:
-Today all my kitchen utensils are new and only I use them, in addition to having my own sink
-My family has cut out gluten (although they still eat cross-contamination)
-Here is everything I eat every day for several months now: water, rice, eggs, chicken breast, dried coconut, mango, calcium and vitamin D supplements (I don't eat out)
-I changed all hygiene products at least 1 time (even those that did not contain gluten in the ingredients to test)
-I don't lean directly on any place that the people here at home touch (I even have my own bathroom)
-Some other precautions that I don't remember to list here but are probably already bordering on paranoia (I'm joking, but I think being a little paranoid until I solve this issue would be the right thing to do)

A little over a year has passed since I was diagnosed with celiac disease I had another endoscopy (a few days ago): Again Marsh 0 bowel (several biopsies), moderate reflux, moderate peptic duodenitis and this time gastritis too (I took a biopsy of the stomach to evaluate gastritis and is within what is expected of a normal gastritis). I want to add the detail that to do the endoscopies I always stopped taking PPIs to have a realistic diagnosis of the situation.

The last tTg-IgA test I did went up to 30 (it was on average 20). I started to think that there could be another cause for the positivity of tTg-IgA, but I only found 2 cases that this occurs: Milk consumption (I don't consume it) and thyroid (I did several thyroid tests and everything is normal). I'm completely out of ideas what to do, I still have symptoms and the positivity of tTg-IgA (as I improved from symptoms when tTg-IgA reduced from 80 to 20 I believe there is a direct correlation between them). Recently my last changes were: I changed the brand of soap I was using to an old one (when the tTg-IgA went up from 20 to 30 the only change I made was the soap) and I stopped using a foot powder that had the ingredient "zea mays starch". I don't know if it will solve the problem, perhaps it is unlikely that it will. I'm suspecting that I may have SIBO too, but I don't know if it justifies the positive tTg-IgA.

That's it, I tried to summarize here some experiences and personal discoveries, I'm open to suggestions and ideas of what to do, obviously I can't detail my routine completely but I can say that I'm at an extreme level of care, at this point I don't know if I'm actually ingesting gluten or not. Thanks for everyone's attention.

[trents]

As far as the continuation of the elevated tTG-IGA, there are some things besides gluten and dairy that can cause that. NSAIDs and at least one blood pressure med can cause elevated antibodies. I think there are some other diseases that can too, like Crohn's.

But I have to ask you, how are you getting tested for antibodies every 15 days? Are you doing it with home test kits?

[LH7]

33 minutes ago, trents said:

As far as the continuation of the elevated tTG-IGA, there are some things besides gluten and dairy that can cause that. NSAIDs and at least one blood pressure med can cause elevated antibodies. I think there are some other diseases that can too, like Crohn's.

But I have to ask you, how are you getting tested for antibodies every 15 days? Are you doing it with home test kits?

Interesting, but the only medication I used in this trajectory are PPIs, so I believe this is not the case. About Chron's disease, my doctor (who by the way is celiac too) asked for the Faecal calprotectin test, which was negative. As I don't have diarrhea I think it's unlikely too. Maybe I have IBS but I don't know how it would relate to tTg-IgA positivity.

About the tTg-IgA tests every 15 days, I do it in the laboratory, it's very close to my house and it's not absurdly expensive. I just draw some blood and I get the result a few days later.

[RMJ]

FYI - Zea mays is corn, so Zea mays starch is corn starch.

[knitty kitty]

@LH7,

Welcome to the forum!

You might find this thread an interesting and informative read....

 

[Wheatwacked]

Nice job on getting to Marsh 0.

Using PPIs to control stomach acid is not a great idea. To start, our stomachs produce H+ to create an acid environment needed to break down foods. Reducing that acid may help the burning but it also interferes with nutrient absorption. Since Celiac Disease causes malabsorption in the intestine, using PPI adds an extra level of malabsorption. The lowered stomach acid allows SIBO  to flourish and studies indicate that PPI use increases SIBO. "The prevalence of SIBO increased after 1 year of treatment with PPI. " Increased Incidence of Small Intestinal Bacterial Overgrowth During Proton Pump Inhibitor Therapy

On my 8th year of GFD I still wake after 2-3 hours of sleep with mild gastritis or painfully cold feet, so about three days a week I would have to get up and take an Alka Seltzer (aspirin and sodium bicarbonate). Between that and the prostate and post nasal drip causing sleep apnea (both resolved with GFD) and various stages of foot neurapathy I don't remember the last time I actually slept more than 4 hours straight. Currently I only eat foods from the Haas diet and have only needed the Alka Seltzer once in the last 3 weeks and just woke up from almost six hours of sleep.

Cottage cheese (curds and whey), bananas, oranges, vegetables, meat.

Another option I found is the Gluten Contamination Elimination Diet (GCED). I am a picky eater with bouts of anorexia and no energy (many years of sleep deprivation) so the simplicity of the Haas diet works for me and I take 10 vitamins and minerals to make sure I am getting enough of them even on days I don't eat enough. It is working for me. The only medication I take is 5 to 10 mg prednisolone (or prednisone, same difference) because before GFD it was the only thing that controlled the constant fibromyalgia. That has caused Secondary Adrenal Insufficiency so I most likely will be on it for life. Before GFD it took 30 mg a day for me to even just stand for more than 10 minutes, so it is a shame I was in denial about Celiac for so long. Maybe when the last of the belly fat and pain is gone I'll work on reviving my adrenal cortex.

[LH7]

21 hours ago, knitty kitty said:

@LH7,

Welcome to the forum!

You might find this thread an interesting and informative read....

 

Thanks for sharing @knitty kitty, it's really interesting and helpful, I'll keep in mind to get off the meds as soon as possible.

 

19 hours ago, Wheatwacked said:

Nice job on getting to Marsh 0.

Using PPIs to control stomach acid is not a great idea. To start, our stomachs produce H+ to create an acid environment needed to break down foods. Reducing that acid may help the burning but it also interferes with nutrient absorption. Since Celiac Disease causes malabsorption in the intestine, using PPI adds an extra level of malabsorption. The lowered stomach acid allows SIBO  to flourish and studies indicate that PPI use increases SIBO. "The prevalence of SIBO increased after 1 year of treatment with PPI. " Increased Incidence of Small Intestinal Bacterial Overgrowth During Proton Pump Inhibitor Therapy

On my 8th year of GFD I still wake after 2-3 hours of sleep with mild gastritis or painfully cold feet, so about three days a week I would have to get up and take an Alka Seltzer (aspirin and sodium bicarbonate). Between that and the prostate and post nasal drip causing sleep apnea (both resolved with GFD) and various stages of foot neurapathy I don't remember the last time I actually slept more than 4 hours straight. Currently I only eat foods from the Haas diet and have only needed the Alka Seltzer once in the last 3 weeks and just woke up from almost six hours of sleep.

Cottage cheese (curds and whey), bananas, oranges, vegetables, meat.

Another option I found is the Gluten Contamination Elimination Diet (GCED). I am a picky eater with bouts of anorexia and no energy (many years of sleep deprivation) so the simplicity of the Haas diet works for me and I take 10 vitamins and minerals to make sure I am getting enough of them even on days I don't eat enough. It is working for me. The only medication I take is 5 to 10 mg prednisolone (or prednisone, same difference) because before GFD it was the only thing that controlled the constant fibromyalgia. That has caused Secondary Adrenal Insufficiency so I most likely will be on it for life. Before GFD it took 30 mg a day for me to even just stand for more than 10 minutes, so it is a shame I was in denial about Celiac for so long. Maybe when the last of the belly fat and pain is gone I'll work on reviving my adrenal cortex.

Thanks for the comment @Wheatwacked. I'm glad you were able to better control your symptoms, not being able to sleep is really a very exhausting issue, I hope you get better as soon as possible.I would just pay special attention to the consumption of milk and its derivatives, there are articles showing that milk is associated with a multitude of diseases, especially in the long term. On this site: https://www.notmilk.com/ you can find the biggest studies ever done in relation to milk. Maybe some of your conditions could be related. 

[Wheatwacked]

The biggest problem with milk is that in most of the world, except for Ireland and New Zealand the commercial dairies use Palmitic acid to increase volume and fat content. The trouble is that palmitic acid (C:16) raises the omega 6 content and omega 6 encourages inflamation. Old style pasture fed milk has a 1:1 omega 6: omega 3 ratio. Organic milk requires at least 120 days of pasture has about 2:1 and commercial milk has a whopping 5:1 ratio. Ideal for humans is thought to be 2:1. Fish oil and specialty omega 3 products help bring it back into balance. That's why they help. So, pay for omega 3 supplements or drink 100% Pasture fed. Milk has lots of nutrients that fish oil does not and not drinking milk opens us up to multiple nutrition deficiencies. For the time being I am limiting myself to pasture fed for coffee (although as a B1 inhibitor I should give up coffee🤣🥛) and I eat cottage cheese for the nutrition.

Edited June 16, 2022 by Wheatwacked

[LH7]

Milk is indeed a very nutritious food, and I must say that for those of us who have dietary restrictions, things like that are like gold. I drank about a liter and a half of milk a day and I loved cheese. I only stopped because I discovered that there were some risks, I had no intolerance or any associated symptoms.
In fact, the issue of palmitic acid is one thing, considering that most of the population has access only to the most profitable milk, I will briefly list some information that I know about milk just for information. Milk, cheese and derivatives have:
- excess casein (one of the proteins most associated with intestinal impermeability - and due to this exposure to several long-term diseases, and in the short term, it is highly correlated with otitis, sinusitis, rhinitis, tonsillitis, asthma and bronchitis)
- about casein, there are two types: (A1 - more inflammatory coming from Holstein cows and with higher mass production / A2 - less inflammatory and coming from zebu cows and lower production)
- about casein, it is a protein with a molecular weight of 140,000 daltons, exceeding the accepted molecular weight for proteins in our intestine (the maximum is 100,000) generating inflammation in the intestinal mucosa.
- excess estrogen hormone (excess estrogen increases risk of breast and prostate cancer)
- eurytrema pancreaticum parasite (this parasite consumes the insulin-producing cells of the pancreas - at the risk of developing type 1 diabetes)
- beta-lactactoglobulin (our body does not have an enzyme to break this protein down)
- Casomorphine peptide (similar to morphine effects - in addition to having a derivation called beta-casomorphine 7 that is associated with mental illness)

I share your pain because I love coffee too , although I still drink some coffee.