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Member Since 11 Mar 2011
Offline Last Active Apr 16 2014 02:22 PM

#909840 Ttg Increased - Please Help! How Am I Getting Cc? So Sick I Had To Go On...

Posted by on 22 March 2014 - 09:56 AM

Hey guys! Four months later and I'm finally better. I wanted to come back and give an update to all that helped me, in hopes of helping others out that might be having similar problems. 


There were a few things going on. I think the biggest factor was that I'd been too low carb for way too long. I have so many food intolerances in addition to celiac that I thought I could "cure" them with a combo anti-candida and scd diet. Unfortunately, in my earnestness, I ended up making myself very sick. I take synthetic T4 for my Hashimoto's and blood tests from a year ago showed I converted the T4 to T3 just fine. After almost eight months on this low carb diet, my T3 plummeted from 2.8 to 1.8 (anything below 2.2 is out of range). The main symptom of this was an extremely wired but tired feeling, almost all the time. It felt like terrible, brain foggy head pressure that made it difficult to even watch tv. Some days I'd just sit and stare at the wall because using my brain was just too difficult. Now, having been diagnosed with Hashimoto's for over ten years, I'm no stranger to brain fog, but this was the most intense it had ever been and it was relentless! After reading published research and internet anecdotes that showed low carb diets lowering T3 levels, I decided to add back fruits and sweet potatoes. In February, three months after upping my carbs back to about 200 grams/day, blood tests showed my T3 had returned to 2.8.


I also was taking a lot of supplements, and although they were all "free of gluten, " I hadn't checked a few of the companies for shared equipment with gluten. These supplements, along with McCormick's turmeric, were the only processed foods I was eating. If you recall from earlier posts, my deamidated antigliadin antibodies were high normal. I did a repeat endoscopy in December, one month after my original post on this topic, and the good news is that my completely villous atrophy is almost all healed after three years gluten free!! After my first endoscopy, three years ago, the doctor didn't even have to wait for the biopsy to diagnose me, the damage had been so bad that he told me I had celiac as soon as I woke up from anesthesia. This time around, the doctor said he wouldn't have known I had celiac just by looking at the small intestine and we'd have to wait for the biopsy. The biopsy results showed rare villous blunting and a slight increase in lymphocytes. So, he concluded I was still getting some cross contamination. I cut out the turmeric, switched to more celiac-friendly supplement brands, and completely stopped all but the most vital supplements. I also switched from Synthroid to Tirosint because Synthroid doesn't test for gluten and don't take measures to prevent cc. The blood tests after three months showed both TTG IGA and deamidated gliadin antibodies decrease slightly, but TTG is still slightly elevated (probably due to Hashimoto's).


Adding back the carbs and being more vigilant about gluten made me feel a better for a a little while. The terrible head pressure was gone, but I'd still have brain foggy days and I started to get terrrrrrible insomnia. I've always struggled with depression and anxiety, and they started to get worse. I was having more emotional meltdowns with the tiniest amount of stress, and I couldn't calm myself down sometimes for a few days. Turns out I was very vitamin deficient. My February blood tests showed low borderline low iron (even though I was taking 25 mg iron bisglycinate, it wasn't enough), low RBC magnesium, and low plasma zinc to serum copper ratio. Adding magnesium, calcium, more iron, and a highish dose of zinc (55 mg) has cured all my mood problems and my insomnia as well as the remaining brain fog!  

My supplements have started to add up again, but hopefully the brands I've picked (Thorne Research, Kirkman Labs, and Country Life) are safe enough that I can handle about 15 capsules a days without problems. And honestly, I've decided that if I'm going to have some rare villous blunting and extra lymphocytes, then so be it. I'm doing the best I can do. For a while I got very frustrated with my catch-22:  since my diet is so restricted from food intolerances, I need a lot of supplements too feel well. But if I take too many supplements, I put myself at risk for too much gluten cc. I've decided that I can't live every second in fear of cc and I'll worry about it only if I start to get symptoms.

Current supplements I'm taking: fish oil, iron, Vitamin D+K, vitamin C, vitamin E, B Complex, B12, zinc, selenium, magnesium, calcium, and an additional multi-mineral. These all seem pretty vital for me and taking them in a multivitamin won't really work because multis have dosages way less than what I need to take.

For the record, the anti-candida/scd diet (along with herbal antifungals, nystatin, and diflucan) did seem to fix some issues. My tongue is the prettiest pink color now (no more white film). Also, for the first time in my life I don't feel like I have constant blood sugar fluctuations and I don't feel hungry all the time (these issues had persisted even after starting a gluten free diet).

But my many food intolerances remain. I can't handle eggs, nuts, dairy, yeast, and most sulfur veggies. This leaves me with very little food choices and keeps me dependent on all my vitamins to get enough nutrition throughout the day. I got laid off from my job three days after returning from sick leave, so seems like the perfect time to look into chelation (the sulfur issues are leading me down this path). If anyone has any suggestions for handling sulfur foods (I'm pretty sure it's an intolerance and not an immune response), I'd love to hear them, doesn't necessarily have to be about chelation.

And thanks again for all the support and suggestions when I wasn't feeling well!


**For people with mood issues, I recommend reading Nutrient Power by William Walsh. Some of the stuff is a bit dry and technical, but I found it fascinating overall. The most useful part for me was seeing all the different mental effects copper/zinc imbalances can have on people - a lot of it was stuff I had been dealing with for years!  And although I've supplemented with zinc on and off throughout the past few years, I don't think I was ever taking a high enough dose to see a clear difference. 

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#897069 Ttg Increased - Please Help! How Am I Getting Cc? So Sick I Had To Go On...

Posted by on 24 November 2013 - 12:08 PM

Thanks so much to everyone for the suggestions. 


To be honest, in the 3 years that I've been gluten free, I can't say that I've ever felt consistently good for more than a week or two at time. The problem is that I don't have overt stomach symptoms right after consuming anything with gluten. My symptoms are mostly mood issues and brain fog/fatigue, and just kind of comes and goes. So it's been really hard to track down the causes. The last six months though, it's been coming more than going. And lately it's basically every day.   One thing that I've consistently done over the past 3 years is take these supplements, and I now realize this has probably been a mistake and should be stopped/lessened. On Friday, I called as many of the supplement companies as I could:


Life Extension: I actually didn't realize they've removed all allergen info from their bottles; when I called they said it's because cross contamination is definitely a potential issue. (Sadface)


Solgar: they have "gluten-free" on all their bottles BUT when I called they said that they use shared equipment with gluten and don't test the final product but assured me that it's gluten free because they use good cleaning processes.... yeah..... so..... they're out too


Vitaminshoppe Brand: I left a message and haven't gotten a response yet, but I'm not holding my breathe for them; I think I read somewhere that they put their label on other company's products so I doubt that they have a consistent process anyway

A.C. Grace: said their Unique E does not share any equipment with gluten


Thorne Research: Quoted from their website and confirmed by phone: "None of our products contain corn, wheat, nuts, or gluten. A few of our products have ingredients derived from a shellfish source, and a few products do contain rice, dairy, soy, or yeast. These allergens are clearly indicated on our product labels and in the product labeling and warnings on our website." 


Kirkman: the representative was initially unsure, but eventually called me back to say that none of their products contain gluten, so they are also a potentially safer alternative


Nordic Naturals: quoted from their website and confirmed by phone: "All of our products (as of July ’09) can be considered gluten-free. If any products are manufactured on shared equipment with other ingredients containing gluten, this is disclosed on the product label."



Gemini, unless you have another specific brand recommendation, I think I'm going to use Thorne Research for the 3 or 4 vitamins that I absolutely need to take (due to deficiencies). I'm going to try to hold off on them as well though and add them in slowly as suggested after a few weeks of no supplements at all. 


I really would love to juice as an alternative to taking all these supplements, but most of the healthy, green juices are loaded with goitrogens, which I think I also need to avoid because of my Hashi's. This last blood test showed my T4 levels as normal but T3 was very low. Not sure how wise it is to load up on the cruciferous veggies right now, but at the same time, they are great sources of iron and folate. Sigh. Does anyone have any thoughts on this??? 



I'm also going to stop all spices for now, even though McCormick's said their gourmet spices are on dedicated/unshared equipment.


As for the shared kitchen, it's 95% gluten free, so I think it should be ok. My mom is the only one that eats any gluten and she took all her breads and the toaster to work with her. Once in a while she might have crackers on a paper plate and then toss the plate. My sponge has always been separate.


I really can't thank everyone enough for the support. I've been driving myself crazy over the past year with numerous red herrings (mold, sulfur, mercury, methylation, gaba and glutamate imbalance, etc)  when the possible answer could be the most obvious one of all: GLUTEN!!!!!  It's funny because i KNEW that "gluten free" really didn't mean "gluten free" but I think I wanted to convince myself that I wasn't one of those celiacs that had to worry about every little trace. I think I've been in complete denial.  :P


I'll definitely post a follow up with my results soon!

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