This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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.
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.
Yes! I've been experiencing the exact same things. I had noticed crashes after taking a B complex over the past few months (which was probably due to other stressors such as gluten cross contamination, adrenal fatigue, etc). I stopped taking them for awhile then took a B-complex for the first time in a while on Friday. Later that day I started to feel really "off" and basically catatonic. I have this happen every so often. I end up staring at a wall for hours. I popped a lozenge that had 5000 mcg methylcobalamin (active form of B12) and within 15 minutes I was up and moving again. And I've been amazing ever since.
I've been reading a lot of about methylation and how it relates to folate and B12. Methylation is very important to the body, and you don't want to be either overmethylating or undermethylating. From reading around on other forums, I know that if you take too much methylfolate without enough B12, it can cause a block in the methyl cycle, which is not good. My theory is that I don't absorb the B12 from the B-complex very well (B12 is notoriously difficult to absorb, especially for us with villi damage), so I end up getting a huge dose of methylfolate without the accompanying B12.
Maybe you should try a methylcobalamin sublingual for when you can't get the shots (I think Klaire Labs has a good gluten free one, but you should double check ).
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.
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)
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.
I'll definitely post a follow up with my results soon!
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:
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)
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)
Teva Brand Flucanazole (company stated this was gluten free)
Sandoz Ativan (company stated this was gluten free)
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
Cardiovascular Research Magnesium Taurate
Life Extension Super K
Life Extension CoQ10
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!!!!
A few months back, I read about a potential source of CC that I'd never even thought of: pharmacists don't clean the trays between refills unless you specifically ask them to. So for the past few months, I've been asking them to clean the trays before filling my prescriptions to prevent CC. It turns out this might not be enough....
I'm currently taking Nystatin, which are dark red pills. This last time when I went to get my refill, the pharmacist said the pills already had white powder all over them and offered to order a new, unopened bottle for me. Turns out, even if you ask them to clean the tray between refills, it may be too late, because they may have previously poured the pills out onto the tray to fill someone else's prescription and not cleaned the tray during THAT refill and then returned the excess pills back into the bottle. The pharmacist recommended that if I'm really concerned about CC, to always get my prescriptions filled from unopened bottles.
I thought this info might help others, especially those that are more sensitive. I'm not sure if this applies to Costco or all pharmacies in general.