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Ttg Increased - Please Help! How Am I Getting Cc? So Sick I Had To Go On Medical Leave


shooz

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shooz Newbie

Hello!

 

I was diagnosed with Celiac in October 2010. I started out with a TTG IGA value of 33 and managed to get it down to 4 in June of 2012. I retested in February of this year and was surprised that my TTG had doubled to 8. My deamidated gliadin antibodies had also increased from 20 to 26.  Starting around that time, I started feeling really sick with LOTS of brain fog in the mornings. I got even MORE vigilant with my diet than I already was, but my health has not improved.

 

In June I retested and my TTG IGA had gone down a bit to 6 and deamidated gliadin was down to 17 (from 26). So i thought I was going in the right direction and dismissed gluten as the cause of my current health issues, instead going on an extreme low sulfur, anti-candida diet that consisted only of chicken, sardines, salmon, avocados, and stir-fried zucchini. I ate this EVERY DAY for almost six months.  Today I got my new TTG IGA results back and they have INCREASED again to 8. Deamidated gliadin results are still pending.

 


I also have Hashimoto's and my anti-thyroid peroxidase antibodies had been steadily dropping in 2012 when my TTG was under control, but now they've gone off the charts again!

 

This week, I went on disability from work because the brain fog/head pressure and fatigue is excruciating and preventing me from doing my job.

 

Other than taking a LOT of different supplements I barely eat anything. It's really a shock to me that I'm still seeing problems with gluten.  I'm hoping that if I list out everything that I'm eating, one of the items might jump out as a possible problem to someone.

 

 

*Food items in past 6 months:

 

Real Salt

McCormick's Turmeric

Vita Organic Extra Virgin Olive Oil (I can't find info on this online, I'l be switching to Kirkland brand from now on)

Mary's Chicken Drumsticks (I only get the packages that are labelled gluten free)

Organic Zucchini

Organic Avocados

Crown Prince Boneless Skinless Sardines in Olive Oil (I didn't eat these often and haven't had them in at least a month because i think I might have had a reaction)

 

 

*Medications:

 

Synthroid

Teva Brand Flucanazole (company stated this was gluten free)

Sandoz Ativan (company stated this was gluten free)

 

*Supplements:

 

Renew Life 50 Billion Ultimate Flora Probiotics

Nordic Naturals Cod Liver Oil

VitaminShoppe Brand N-Aceyl Cysteine

VitaminShoppe Brand Tryptophan

VitaminShoppe Brand Calcium/Magnesium

Solgar Vitamin D3

Solgar Gentle Iron

Solgar Vitamin C

Solgar Chelated Molybdenum

A.C. Grace Unique E

Nutribiotic Grapefruit Seed Extract

Jarrow's sublingual B12

Thorne Pic-Mins

Thorne Riboflavin

Carlson Selenium

Kirkman Zinc

Cardiovascular Research Magnesium Taurate

Life Extension Super K

Life Extension CoQ10

Lauricidin

 

I haven't been too vigilant with the supplements. As long as they say NO GLUTEN, i assume they are ok but maybe I need to call each company and make sure there's no cross contamination?

 

All my dishes at home are new and separate. I don't wear lipstick and my lotions/facewash/shampoo/conditioner are all gluten free. 

 

I know sometimes Hashimoto's can cause elevated TTG, but the fact that my deamidated antigliadin antibodies won't go down makes me think it's gluten. Especially since I had managed to get my TTG down to 4 in the past and THAT was what was making my hashi's antibodies go down.

 

Any insights would be soo appreciated - it's been such a tough year :(  THANKS!!!!

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MJ-S Contributor

Food wise, the turmeric jumps out at me. I can't handle any kind of turmeric or turmeric-based curry powder. I had bad reactions to both (another brand). Keep in mind with spices the issues have less to do with who the manufacturer is, than with the lack of control and consistency of food handling at the source end (usually countries in Asia, India).

 

I would not suspect the Crown Prince sardines - I do eat them occasionally (but I eat the kind with bone and skin, less processing and more nutrients that way) and I'm fine with them, and I'm very sensitive.

 

Many sensitives have reported trouble with chicken. I'm not familiar with Mary's or their processing techniques. I do well with the more natural chicken options at Whole Foods that have nothing (no antibiotics, etc.) added to them. I do wash the chicken very thoroughly before cooking it.

 

The other large red flag is the amount of supplements you're taking. That leaves a huge opening for cc. I never took more than 2-3 supplements at a time, but I can tell you that when I discontinued them I got better. I don't take any oral supplements now as I've definitely been glutened by at least a couple of them. I'm not suggesting you discontinue the most necessary ones if you've been found to be low on certain vitamin levels, but you should focus on those deficiencies, cut out the rest, and try to look for certified gluten-free options. And yes, contacting companies to find out about shared equipment is a good idea.

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GF Lover Rising Star

The amount of supplements jump at me also,  I think you may want to cut out most supplements and eat more whole foods.  I hope you start to feel better soon,

 

Colleen

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MJ-S Contributor

It also sounds like you're using a shared kitchen at home. This is very difficult. Make sure that you have not only your own dedicated dishes, pots, pans, and cooking utensils stored separately, but that you're using a separate sponge to wash these dishes, your own dishrag, a clean counter space, etc.

 

I don't know if it's at all possible for you to have a gluten-free kitchen. Average celiacs often manage with shared kitchens, but for the more sensitive, it's practically impossible. I would not be able to live in a shared environment without being sick all the time. Think about having to constantly worry about fridge and door handles, crumbs in the area, family members touching gluten and then touching you, etc!

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dilettantesteph Collaborator

When the FDA decided on the 20 ppm limit for gluten-free foods, they said something like this level is safe for the vast majority of celiacs.  Some of us are not in that vast majority.  There was a study published recently on celiacs who continued to have symptoms and some were relieved by eliminating these types of foods.  Open Original Shared Link

 

Many of us seem to get more sensitive as time goes on.  I know I have.

 

I also am in strong agreement with the above comments about supplements.  There was a recent study done in Canada that found that a lot of supplements don't contain what they are supposed to: "and that pills labeled as popular herbs were often diluted — or replaced entirely — by cheap fillers like soybean, wheat and rice."  Open Original Shared Link

I improved when I gave up my vitamins and supplements.  I now take one supplement which I chose and trialed carefully. 

 

I also agree about possible contamination from a shared household.  There are many on this forum who manage shared households without too many problems.  My family tried for a year in my family and could not manage it.  I don't know if it is due to the level of sensitivity, or the level of control measures, but it didn't work for us.  Also, when my husband was still eating gluten, I seemed to get glutened sometimes when we had intimate contact.  I think that sometimes his care with tooth brushing wasn't enough.

 

About your test numbers, aren't they largely below the acceptable limits?  You may be worrying about numbers that are in the error range.  Tests generally have an error, like for instance 30 plus or minus 3.  Then numbers like 1 or 2 are meaningless.  I would worry more about symptoms than exact numbers.

 

I am pretty sure that I have reacted to McCormicks turmeric and Crown Prince no salt packed in water salmon, but I seem to be extremely sensitive.

 

I think that it would be a good idea to go on a diet of produce and unprocessed meat only.  After you get your symptoms under control you will be able to trial processed foods to see which ones you can tolerate.  Keep a food/symptom journal.  I find that it is best to only try one thing per week because it can take that long to be sure about symptoms.  I don't always have the discipline to do that though.  I hope that you feel better soon.

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Gemini Experienced

If you really want to take supplements, and some of us have to, then buy a Celiac multi. There are companies that cater exclusively to Celiac Disease and their supplements are very safe. I am particularly sensitive and source my supplements from those who state they are formulated to exclude gluten. You are also taking quite a lot of them so if you aren't being uber careful sourcing them, they could be the problem.  Any Celiac would run the risk of low level glutening from so many supplements, taken every day.

 

You need to see the results of your latest DGP to see if you are ingesting anything OR it could be you are having a swing in thyroid hormone and need to adjust your dose.  That has happened to me twice in my recovery, over 8 years, and I know how unpleasant that is. You do not need to be ingesting gluten for your thyroid to become a bit unstable. That's the beauty of Hashi's....unpredictable little buggar! Thyroid hormone elevates.......tTg can elevate. :(   I feel your pain and hope you feel better soon.

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frieze Community Regular

Hello!

 

I was diagnosed with Celiac in October 2010. I started out with a TTG IGA value of 33 and managed to get it down to 4 in June of 2012. I retested in February of this year and was surprised that my TTG had doubled to 8. My deamidated gliadin antibodies had also increased from 20 to 26.  Starting around that time, I started feeling really sick with LOTS of brain fog in the mornings. I got even MORE vigilant with my diet than I already was, but my health has not improved.

 

In June I retested and my TTG IGA had gone down a bit to 6 and deamidated gliadin was down to 17 (from 26). So i thought I was going in the right direction and dismissed gluten as the cause of my current health issues, instead going on an extreme low sulfur, anti-candida diet that consisted only of chicken, sardines, salmon, avocados, and stir-fried zucchini. I ate this EVERY DAY for almost six months.  Today I got my new TTG IGA results back and they have INCREASED again to 8. Deamidated gliadin results are still pending.

 

I also have Hashimoto's and my anti-thyroid peroxidase antibodies had been steadily dropping in 2012 when my TTG was under control, but now they've gone off the charts again!

 

This week, I went on disability from work because the brain fog/head pressure and fatigue is excruciating and preventing me from doing my job.

 

Other than taking a LOT of different supplements I barely eat anything. It's really a shock to me that I'm still seeing problems with gluten.  I'm hoping that if I list out everything that I'm eating, one of the items might jump out as a possible problem to someone.

 

 

*Food items in past 6 months:

 

Real Salt

McCormick's Turmeric

Vita Organic Extra Virgin Olive Oil (I can't find info on this online, I'l be switching to Kirkland brand from now on)

Mary's Chicken Drumsticks (I only get the packages that are labelled gluten free)

Organic Zucchini

Organic Avocados

Crown Prince Boneless Skinless Sardines in Olive Oil (I didn't eat these often and haven't had them in at least a month because i think I might have had a reaction)

 

 

*Medications:

 

Synthroid

Teva Brand Flucanazole (company stated this was gluten free)

Sandoz Ativan (company stated this was gluten free)

 

*Supplements:

 

Renew Life 50 Billion Ultimate Flora Probiotics

Nordic Naturals Cod Liver Oil

VitaminShoppe Brand N-Aceyl Cysteine

VitaminShoppe Brand Tryptophan

VitaminShoppe Brand Calcium/Magnesium

Solgar Vitamin D3

Solgar Gentle Iron

Solgar Vitamin C

Solgar Chelated Molybdenum

A.C. Grace Unique E

Nutribiotic Grapefruit Seed Extract

Jarrow's sublingual B12

Thorne Pic-Mins

Thorne Riboflavin

Carlson Selenium

Kirkman Zinc

Cardiovascular Research Magnesium Taurate

Life Extension Super K

Life Extension CoQ10

Lauricidin

 

I haven't been too vigilant with the supplements. As long as they say NO GLUTEN, i assume they are ok but maybe I need to call each company and make sure there's no cross contamination?

 

All my dishes at home are new and separate. I don't wear lipstick and my lotions/facewash/shampoo/conditioner are all gluten free. 

 

I know sometimes Hashimoto's can cause elevated TTG, but the fact that my deamidated antigliadin antibodies won't go down makes me think it's gluten. Especially since I had managed to get my TTG down to 4 in the past and THAT was what was making my hashi's antibodies go down.

 

Any insights would be soo appreciated - it's been such a tough year :(  THANKS!!!!

I would rethink the vitaminshoppe supplements, I checked out the ca/mag...none of them were listed as gluten free, only wheat free.

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NoGlutenCooties Contributor

I take Country Life brand Calcium/Magnesium/Potasium - good levels and gluten free:

 

 

Supplement Facts
Serving Size 2
Servings Per Container 90
block.gif  
Amount Per
Serving
% Daily
Value
block.gif
Calcium(AS CALCIUM HYDROXYAPATITE, CITRATE, ALPHA-KETOGLUTARATE, ASPARTATE, LYSINATE)
500 Mg
50%
block.gif
Phosphorus(From Calcium Hydroxyapatite)
250 Mg
25%
block.gif
Magnesium(As Magnesium Oxide, Magnesium Citrate, Magnesium Alpha-Ketoglutarate, Magnesium Aspartate & Magnesium Taurinate)
500 Mg
125%
block.gif
Potassium(As Potassium Citrate, Potassium Alpha-Ketoglutarate & Potassium Aspartate)
99 Mg
3%

 

I order them through VitaminShoppe.com

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frieze Community Regular

I take Country Life brand Calcium/Magnesium/Potasium - good levels and gluten free:

 

 

Supplement Facts
Serving Size 2
Servings Per Container 90
block.gif  
Amount Per

Serving

% Daily

Value

block.gif
Calcium(AS CALCIUM HYDROXYAPATITE, CITRATE, ALPHA-KETOGLUTARATE, ASPARTATE, LYSINATE)
500 Mg
50%
block.gif
Phosphorus(From Calcium Hydroxyapatite)
250 Mg
25%
block.gif
Magnesium(As Magnesium Oxide, Magnesium Citrate, Magnesium Alpha-Ketoglutarate, Magnesium Aspartate & Magnesium Taurinate)
500 Mg
125%
block.gif
Potassium(As Potassium Citrate, Potassium Alpha-Ketoglutarate & Potassium Aspartate)
99 Mg
3%

 

I order them through VitaminShoppe.com

the op listed three supps as being branded vitamin shoppe...

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NoGlutenCooties Contributor

the op listed three supps as being branded vitamin shoppe...

 

??  VitaminShoppe does not have on the label that it is gluten-free, so I suggested Country Life as an alternative - they are tested to be gluten-free

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shooz Newbie

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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shooz Newbie

 

About your test numbers, aren't they largely below the acceptable limits?  You may be worrying about numbers that are in the error range.  Tests generally have an error, like for instance 30 plus or minus 3.  Then numbers like 1 or 2 are meaningless.  I would worry more about symptoms than exact numbers.

 

 

My lab states that DGP less than 20 is considered negative, and mine was 17 in June, but isn't this the number that should be as close to zero as possible? I should get the results for my most recent test tomorrow morning, and that should help narrow down what's going on.  For the other super sensitive people, how low should I expect this number to be??? I know zero isn't possible, but something tells me 17 is still too high.

For TTG, a value less than 4 is considered negative, and I agree that going from 4 to 8 could mostly be due to lab error, but my symptoms are making me think otherwise. 

 

Also, I know Gemini said that Hashi's can elevate TTG, but couldn't the reverse also be true. Couldn't consuming trace gluten (as shown by elevated DGP) cause TTG to rise and as a result cause a flare up in Hashimoto's antibodies? I say this because my blood test in February showed that my DGP and TTG were higher than they were in Jun 2012. That same test showed my thyroid numbers were great. T3 was good. T4 was good. Anti-TPO antibodies had fallen from mid 800s to mid 500s (three years ago they had started out at >1000). One month later my brain fog and fatigue started to get much worse, and when I retested in June of this year, my anti-TPO had climbed to 800s again, and most recently it's back above 1000. Other than gluten, what could have caused such a rapid swing? (we DID have lots of mold in my house, which we remediated a few months ago, but antibodies and symptoms have not responded to the remediation)

 

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dilettantesteph Collaborator

 Couldn't consuming trace gluten (as shown by elevated DGP) cause TTG to rise and as a result cause a flare up in Hashimoto's antibodies?

 

 

I think that you are right about this.  Personally, I am just happy when I can be symptom free.  That's difficult enough.  I source everything very carefully and grow what I can myself.

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Gemini Experienced

 

 

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??? 

 

 

Please remind me of the thyroid med you are using?  If you have Hashi's, you really need to be supplementing with T3 and not just use a T4 only med.  My T3 was low until I switched to Nature-throid, which has both thyroid hormones. Many docs are resistant to using natural thyroid meds.  If you use a T3 added hormone, it should help drive your antibodies down, over time.  My thyroid antibodies were 1200 at diagnosis of Celiac and now are 32.  But it took 7 years to do that. 

 

I must warn you....Hashi's can swing and you can go through rough periods trying to stabilize it.  That has happened to me twice and I had a rough couple of months, a few years back, getting back on track. Mine went totally hyper because I started to absorb better after healing and needed to seriously cut back on dose.  Then it swung too low and I ended up with shingles. Suck-a roo!

 

I think you may have been glutened by your supplements.  You take many of them and I understand that because I also take supplements and need to. I am a skinny Celiac and need all the help I can get.  Supplements have their merit.  But you must make sure the ones you take are really gluten-free and there are numerous Celiac related supplement lines out there. Metagenics is one but they are only available through a doctor's office. Many can be found by using Google.  I am reluctant to tell you to cut out cruciferous veggies but can tell you that if you steam (cook) them, the effect on your thyroid diminishes. It only applies to raw, cruciferous veggies.  I steam most of mine.

 

I would not get all wound up with the super sensitive thing. You were taking a lot of supplements without being uber careful about content so work on that. I am very sensitive and do eat some gluten-free processed foods with no impact on my health. I think that line of thinking is overblown because if there was that much contamination in everything, no one would heal and most Celiacs do. Understand that the thyroid takes awhile to master and now and again, you still may have a swing or blip, that needs to be tweaked. Thyroid responds slowly to med changes so it will take longer than you want to settle down. But, yes, if you have been taking small hits on a daily basis, then it could absolutley affect thyroid function. That would happen to anyone with both diseases.

 

Much of the symptoms you mentioned are also consistent with Hashi's and Celiac so congratulations......you have the double whammy. I totally understand your frustration.

But, hang in there because it can be turned around.  Watch those supplements, load up on good protein and eat those veggies because they will help you get better.

 

Open Original Shared Link  Here is one vitamin that is geared just for Celiac's.  They probably cost more but if they are good vitamins and within your budget, then keep them as an option.

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dilettantesteph Collaborator

I think that line of thinking is overblown because if there was that much contamination in everything, no one would heal and most Celiacs do. 

 

Some don't though and those who are sensitive to smaller traces need to be more careful, however small a number that might be.  I can personally attest that is the case with my son and with me.  

 

I agree that there are other possibilities that you can pursue first, but keep this one in the back of your mind in case those don't work.

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shooz Newbie

Thanks guys! DGP results came back at 18 (<20 is negative). In June 2012, DGP antibodies were 20, February 2013 they were 26, and June 2013 they were 17. So even though these numbers are hovering around the "negative" mark, I don't think they are low enough for me not to have symptoms, especially Hashimoto's symptoms.  I'm on day two of close to zero supplements (I'm taking Thorne Research NAC and tryptophan because I can't cut these two cold turkey without having severe mood swings from withdrawal). I'll report back in a week or so about my progress. I don't want to speak to soon, but I think I'm already starting to see improvements.

 

Happy Thanksgiving!!!

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dilettantesteph Collaborator

That's great to hear.  I hope that you continue to improve.

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  • 3 months later...
shooz Newbie

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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moosemalibu Collaborator

Thanks for the update! I am glad to hear you are feeling and coping better with it all. I am sad to hear about your layoff. I hope that doesn't affect you too much.

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Gemini Experienced

Where did you read that eating a low carb diet could drive down your T3? I would be interested in hearing more and if it's true, time for a cake pop!

Congratulations on feeling better.........glad you figured things out. I would not worry a bit about a few rogue villi.......no one has the perfect insides and it most likely will not keep you from leading a normal life!

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shooz Newbie

Thanks guys. I'm not too stressed about the layoff. I got some severance, so it's a perfect chance to relax for a little bit longer and experiment with my food intolerances. 

Gemini, I'm not sure if I can copy-paste links in here, but if you google search "low carb t3" or "gaps diet low carb t3," you'll see a few different results. I think there's some arguing back and forth about it in the paleo community and most of the stuff is anecdotal, but it's definitely a concern that some people are raising. There's a site by Anthony Colpo that summarizes a few different studies. Most of the studies had other variables tweaked in addition to carbs (calories, protein content, fat content), but there are consistencies in the results with regards to T3. I can say for certain that my problems began in February 2013 when I started my low carb diet to heal my gut and they didn't get better until after I added carbs back in. And my lab work completely matches my observations. Maybe I was especially sensitive because of my Hashimoto's and because I take T4 without any additional T3.  Who knows! I just think it's something people should be aware of in case they've been low carb for a long time and not feeling well.  

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Gemini Experienced

I personally do not think that low carb diets are that good for people. Healthy carbs have their place and most people feel better eating them. I'll have to google this and take a look myself.........after that cake pop!

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dilettantesteph Collaborator

Congratulations on feeling better and being able to figure it out while suffering from such brain fog.  I have a suggestion for nuts.  Both my son and I have problems with most nuts but we can eat macadamia nuts purchased in the shell.  You have to buy a special nut cracker so trying them would cost a bit, but may be worth it.  Also for eggs.  We can't eat regular eggs, but can eat local pasture eggs in season.  It might be worth a try depending on your reasons for why you can't eat them.  I hope that you continue to do well.

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shooz Newbie

Yup, no more low carb for me. It's lots of fruit and sweet potato for now, but I can't wait until the day I can eat cupcakes again!!

Thanks for the suggestions, dilettantesteph. I tried brazil nuts in the shell from nuts.com but I got really really sleepy (like taking a sedative) after eating two of them. I've learned that if  I get abnormally sleepy after eating, there's a problem. I can try macadamia nuts too and see if they work out again. I LOVE macadamia nuts! The eggs are a problem because of the sulfur, not sure if I have an additional protein intolerance to them on top of that. My sulfur reaction is extreme fatigue that can last for days, depending on how much of the sulfury food I eat.

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