marren27

Thanks, I'm very glad to go back to gluten-free. I was lucky I did not need to eat it very long to prep. And yeah... I don't know why some people just choose to go gluten-free! I would never do it if it weren't for having Celiac.

Thanks everyone. Got the endoscopy today showing mild villous blunting. Biopsy results in 5-7 days.

Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.

On 4/5/2017 at 0:22 AM, marren27 said:

Gemini, thanks for your knowledgeable and informative response, especially your background similar to mine with the bloodwork.

Yikes--high intestinal damage would explain my low vitamin D, iron, bone density. . .

My TSH was below 1, and after cutting the dose by 1/4, I can focus better and don't feel hyper. That was my bone doctor who advised me to cut it, but she only tested TSH, so I am going to go back to my naturopath (ND), who prescribed it, when I return from my trip and have her retest me. The naturopath tested a lot of things TSH, T3, T4 (multiple ways?) and my T3 and T4 were low but not my TSH and that's how I was prescribed. I think my dose was initially too high, but my bone doctor wanted me to cut it by 1/2 and I tried that and could not function.

We have tons of AI one side of my family. Everyone has at least one. 

Thanks! I already notice I feel better. I'm used to people telling me it's all in my head so there is self-doubt--hopefully the genetic test will be the answer for me.

 

Update: Gemini, you were right! I went to the GI doctor today. I'm still getting scoped to check out the damage (but I won't need to go back on gluten--that IS NOT happening!), but she said there's nothing else that can cause those numbers. 

I'm sorry to hear about your daughter's skin causing her pain. If you haven't yet, take her to a dermatologist, it could be something like eczema. I get itchy skin from gluten but no rash, and my sister, who does not have Celiac does have eczema and it causes her skin to hurt very badly and itch when she doesn't treat it with special ointment and cream. It could be a type of dermatitis too. Her's would flare up really bad when she was a baby and had an egg allergy. 

Hi everyone,

Due to poor bone health and high blood work, I am suspected to have Celiac's (a few more weeks and I will be back in the States to complete testing!).

Anyway, I'm wondering if anyone had success stories about regaining bone density? My nephrologist says this will happen, and I trust her, but I would like to hear what anyone here did that helped or any sort of recommendations. 

If Norway is anything like its next-door neighbor, Sweden, you should be OK. My relatives were recently in a smaller Swedish town (not Stockholm) and said there was a wide selection of gluten-free at most grocery stores, gluten-free bakeries everywhere, gluten-free options at many restaurants, they said it was even better than their selection in the Pacific Northwest.

A general tip for Europe: they add wheat to yogurt sometimes, so be careful of that. 

I found lots of tips googling "gluten free Norway."

Waitwhathm, great to hear you are finding some products--cool that you found chicken like that! Kudos to you being proactive and finding products online and cooking.

Just know you're not alone. I'm in a similar boat to you (Russia, ordered off gluten a week before leaving). I miss eating out too.

If you haven't already, look for Tamari sauce (soy sauce without wheat). It would be a great staple for stir fries. You've probably heard this already, but cooking with basics: rice, vegetables, plain chicken, minimizes risk.

I'm finding I need to read labels really thoroughly, even on things that don't seem like gluten products (for example, wheat in yogurt sometimes). 

Happy news to hear of your daughter's drastic improvements! You must be a proud mom!

Thanks Gemini--you're right, I told a doctor a few years ago I had issues sometimes with wheat and they blew it off and told me that I was eating too much fiber. 

Thanks for the advice, I will get those tested ASAP when I get home. Yes thyroid medication is a miracle but only in the correct dose!!

Wow, your poor niece. Surprisingly, I'm the (tentatively) first diagnosed with Celiac on either side though my great-grandfather had a "wheat allergy" his whole life.

I'm sorry about your osteoporosis, but that's great you are taking care of it with exercise. You guessed right and I still have a couple years to get them back and am glad I found this now.

Thanks for the support, I will keep everyone updated. :-)

Thank you Gemini! I'll look through these. I had already bought my plane ticket so I went for it!

cyclinglady, great idea. I find the people here are generally helpful (they just don't understand cross contamination) so I'll try that. 

If you're ok with some sugar from vegetables, carrots and Bolthouse Farms blue cheese yogurt dressing is one of my favorite gluten-free snacks. 

And any other replacement suggestions are appreciated! I'm looking through the coping forums for ideas. 

Thank you for the information, Jmg. With my move overseas I have not found gluten-free oats and have been eating regular oats, but with all of this response I am now replacing those with rice and buckwheat.

White bread is usually fortified with vitamins, while whole grain bread is usually not fortified. Even gluten-free cereals such as Lucky Charms give me problems, and I suspect it's from all of the added stuff. The low fiber can also cause the issues. 

Gemini, thanks for your knowledgeable and informative response, especially your background similar to mine with the bloodwork.

Yikes--high intestinal damage would explain my low vitamin D, iron, bone density. . .

My TSH was below 1, and after cutting the dose by 1/4, I can focus better and don't feel hyper. That was my bone doctor who advised me to cut it, but she only tested TSH, so I am going to go back to my naturopath (ND), who prescribed it, when I return from my trip and have her retest me. The naturopath tested a lot of things TSH, T3, T4 (multiple ways?) and my T3 and T4 were low but not my TSH and that's how I was prescribed. I think my dose was initially too high, but my bone doctor wanted me to cut it by 1/2 and I tried that and could not function.

We have tons of AI one side of my family. Everyone has at least one. 

Thanks! I already notice I feel better. I'm used to people telling me it's all in my head so there is self-doubt--hopefully the genetic test will be the answer for me.

ravenwoodglass, good suggestion. There is a kitchen, I have been making buckwheat (only $1 for 1 lb here), rice, and oats (which I am going to start phasing out). I was hoping for a snack/cracker-type item, but no avail. :|

Those dining cards, I think I found them online. I have mostly avoided going out to eat because of my budget and I don't want to deal with it--sometimes people here are dishonest about how they prepare food.

Thanks, this is a very informative community so I am glad I found it!

Thank you for your response ironictruth. Now that would be funny if ended up a case study. :-) 

I appreciate your suggestions. My bone doctor ordered me off gluten after the test because I had/ve a stress fracture that was not healing. Unfortunately, I do not think I will be able to enjoy gluten food here, as I was accidently glutened yesterday and my lips have sores and my skin itches today. They may end up doing a genetic test, additional bloodwork, and skipping the scope--I am complying with whatever they tell me to do. 

Very disappointed. I'm in Russia and there are not many gluten-free options for snacks (I would have been more prepared but I was ordered  to go gluten-free a week before I had to leave for this 3 month long stint). 

Anyway, I found some Dr. Korner caramel rice cakes labelled "Gluten free" and bought them, trusting the label (which I will not do again). Ate almost the whole pack last night before becoming curious about the ingredients. Yeah, first ingredient is barley. Today, my skin itches, my stomach felt like lead this morning, and my lips are swollen and have sores. I wrote something on their FB page but who knows if it will do any good.

EDIT: They approved my FB post, and the UK and Russian entities have separate pages. I posted on the UK page, and they do not label this product as gluten-free in the UK.

Thank you for your response, ravenwoodglass. This is in line with what I've found from medical--that both of these tests have high specificity. 

I will take a look at the thread, this looks like a great community to get guidance. I appreciate your warning because oats have always been a big part of my diet, and could have played a role in my numbers.

Anyone have suggestions for eating gluten free in Moscow, Russia? Food products from grocery stores, brands?

Hi Celiac community,

I got a stress fracture and then went to a bone doctor, who tested me for Celiac. I was surprised (but not really, I had terrible symptoms to wheat as an infant but that is another story) when my blood test results came back. Anti tTransglutaminase, IgA was >250 (normal 0-13), and Anti Deaminated Gliadin, IgG was 68 (normal 0-13). At the same time, my TSH was a bit low so I was advised to drop my thyroid dose, which I have done. 

A week later, I left for an internship overseas, and have to wait 3 months to get scoped. Due to my stress fracture, my doctor advised me to eat gluten-free anyway, which I have been doing (with a few mishaps, argh, and I am still eating oats). I feel like I am sitting in limbo--do I have Celiac's or not? I realize this is not somewhere I can get a definitive diagnosis, but what is the probability that these tests were false positives due to my thyroid medication being too high? I will get scoped next month or do a genetic test, or both.