No Doctor Help. What Should I Do?

[Bethinjapan]

So, here's my deal. We're missionaries in Japan and haven't been back to the States for about four years. I've been dealing with so much pain and a long list of symptoms (I'll get to those in a minute) that I didn't think were related, until last week. A friend was talking about celiac. I'd never heard of it before, and while I marvelled at all the similar symptoms she was mentioning, I quietly thanked God I didn't have THAT wretched sounding illness!! Ha! I totally dismissed it at the time. But a few days later I was sitting on the couch wondering what in the world could be wrong with me and what I was going to do! I'm not a doctor person and just knew going to the doctor wouldn't fix me. What my friend had said about celiac popped in my head and I immediately went to look it up. I about flew out of the chair when I read down the list of symptoms. It felt like someone had taken all of my symptoms, wrapped them all up into one big package, and put a name to them! That was last Saturday! Monday morning first thing, I took myself to the doctor, something I've NEVER done in six years of living here, and my Japanese is not all that great. I just felt like I'd found my solution and wanted to get to the bottom of it! He didn't know the first thing about celiac and told me that because my protein wasn't low that I didn't have it, but that he would send me to a specialist just in case. Yesterday, off we went to the "specialist", prepared with the list of tests I wanted to request and everything (just in case the doctor didn't know what to do). He again tried to give me the protein line, but I'd looked into that and knew it didn't mean didley. I showed him the tests I needed and showed him my prepared list of symptoms. He looked at my list and told me they don't even HAVE these tests in Japan! (Sigh... note to self, this is why we don't have a lot of faith in doctors...here at least.) Japanese people do not get celiac, almost ever. Not in their genes.

We're hoping to go back to the States next year for a furlow, so do I stay on gluten until then or just assume this is my problem and go off now, so I can function for the next year. (I'm a homeschooling mom of two, pastors wife, English teacher, etc, etc, and REALLY need to feel better!)

So here's my laundry list of symptoms:

I have stomach pain and gas ALL the time. It doesn't come and go, it's just always there. I've learned to live with it and ignore it as much as possible, figuring everyone has gas and I probably have Irritable Bowel or something. I have noticed that Japanese barley tea makes it the worse, and there's nothing in it except barley and water. Even when I was eating on a very natural healthy diet (I've tried EVERYTHING, even fasting for two weeks straight), I was drinking this thinking it was all natural and okay, and I still hurt.

Then there's the diarrhea...again I figured it was probably Irritable Bowl, but getting worse. Several times a week now for at least the past year or two, and seems I go back and forth between constipation and diarrhea every other day or so.

Then there's the pain all over my body all the time. All my joints hurt and I have to be SO careful how I sleep or sit or anything. Wakes me up several times a night, etc.

I've always had good teeth, until my last trip to the dentist. Imagine my surprise when they told me I had no less than five cavities! .

I'm always tired. I knew inside that I'm always tired-er than everyone else, but I didn't have an excuse to be, and didn't want to be lazy, so just push through most of the time. After all, everyone's tired right?

Then there's this horribly ichy rash I keep getting all over my bottom. I can't help but scratch it until it bleeds.

Infertility is a biggy. We've been trying to have our third child for five years, and it just didn't make sense how we could have two and then no more.

Irritability and depression...well, we're all irritable and depressed, right? Haha!! And I'm a Christian, so it would be wrong to be depressed (rolling eyes)!...Woman up, Sistah!!...(This is my recurrent lecture to myself! Ha!)

Have I mentioned the peripheral neuropathy? How my hands go numb at wierd times, etc. Constantly! It's so annoying!

Okay, I could go on, but you're probably all snoring by now, and I think I got the worst ones anyway. So please tell me what I should do now!! I need some sort of direction from someone who knows more about this than I do! Do you think I have celiac? I've gone gluten free for two days, but I just don't know if that's the right thing to do. There are no gluten free products here, and my diet is going to be EXTREMELY limited. I just don't know how I can do this, but I'm afraid of the damage I might be causing by continuing to eat it and I'm kind of thinking it might be pretty damaged already.

Any advise would be hugely appreciated!!

Beth

[LDJofDenver]

Oh my gosh, I feel for you! Your symptoms sound like mine, even down to the neuropathy.

It's a tough decision as to whether or not to go gluten free now, then face a gluten challenge in order to get confirmed testing next year. But if you did it for a month and your whole world changed (for the better), you'd have your answer.

There are places where you can get the genetic testing, and also antibodies. They send kits, you send samples back to them for testing -- not sure what cost, handling from Japan would be etc, but worth looking into. Here's a link to one: Open Original Shared Link If a blood draw was required (and do-able from Japan, express mail?) your Dr. there could do the draw and then you could send it off for testing.

Another I hear about a lot on this forum is Enterolab. Here is a link to an article about such kits and testing: https://www.celiac.com/articles/1043/1/Two-...rate/Page1.html

A lot of celiacs are self-diagnosed, and don't care if they ever have it confirmed by the medical profession. Usually after years of suffering and misdiagnosis, they went gluten free out of desperation in their quest to find an answer/get relief, and indeed found that all their symptoms disappeared after eliminating gluten from their diet.

Meat, fish, veggies, fruit, nuts, potatoes, rice, etc., all are gluten free. You can order mixes to make bread items, etc. to get you through your stay in Japan, if you decide to go gluten free. Keep in mind, too, (if you go gluten free) that there is wheat in most soy sauce.

There's an awful lot available on websites these days, if you're stuck somewhere without local options.

Hope some of this helps.

[Sirenita]

Hi Beth, I'm so sorry to hear all the pain and discomfort you've been feeling. My honest opinion? Make a trip home and see a doctor. Yes, it's disruptive and expensive, but your long term health is worth the time and money, especially since you can't really function as you are anyway.

You could try going gluten free like your doing now, which is what I did (because I'm in the UK and doctors are a bit hit and miss here.) but the problem with that is a gluten challenge made me feel so overwhelmingly awful, I just couldn't continiue with it, so now here I am, not diagnosed which means no discounted gluten-free food for me here. My doc is a reasonable person so I'm sure I could ask him for a referal to a nutrionist, which i would normally get if I were diagnosed, but he might not, then I'd have to pay for that as well. I wish I'd known about celiac disease a year ago and haden't been so impatient to feel better.

There's also the chance it might be something else, so it's definitly not worth taking a gambel with overseas doctors. God helps those who help themselves, and you've been given a lot of clues that you need to get checked out by someone you can trust.

I hope whatever you do, you feel better soon.

xx

S

[kenlove]

My doc in Japan is Takeshi Imai who uses the name steve. he is in South Yokohama and a great guy. Been friends for more than 20 years.

Takashi Imai <takashikun.imai@nifty.com>

He has written some in Japanese about celiac which has helped me in more rural areas of Japan. Anyway feel free to email him

and good luck!

Ken

So, here's my deal. We're missionaries in Japan and haven't been back to the States for about four years. I've been dealing with so much pain and a long list of symptoms (I'll get to those in a minute) that I didn't think were related, until last week. A friend was talking about celiac. I'd never heard of it before, and while I marvelled at all the similar symptoms she was mentioning, I quietly thanked God I didn't have THAT wretched sounding illness!! Ha! I totally dismissed it at the time. But a few days later I was sitting on the couch wondering what in the world could be wrong with me and what I was going to do! I'm not a doctor person and just knew going to the doctor wouldn't fix me. What my friend had said about celiac popped in my head and I immediately went to look it up. I about flew out of the chair when I read down the list of symptoms. It felt like someone had taken all of my symptoms, wrapped them all up into one big package, and put a name to them! That was last Saturday! Monday morning first thing, I took myself to the doctor, something I've NEVER done in six years of living here, and my Japanese is not all that great. I just felt like I'd found my solution and wanted to get to the bottom of it! He didn't know the first thing about celiac and told me that because my protein wasn't low that I didn't have it, but that he would send me to a specialist just in case. Yesterday, off we went to the "specialist", prepared with the list of tests I wanted to request and everything (just in case the doctor didn't know what to do). He again tried to give me the protein line, but I'd looked into that and knew it didn't mean didley. I showed him the tests I needed and showed him my prepared list of symptoms. He looked at my list and told me they don't even HAVE these tests in Japan! (Sigh... note to self, this is why we don't have a lot of faith in doctors...here at least.) Japanese people do not get celiac, almost ever. Not in their genes.

We're hoping to go back to the States next year for a furlow, so do I stay on gluten until then or just assume this is my problem and go off now, so I can function for the next year. (I'm a homeschooling mom of two, pastors wife, English teacher, etc, etc, and REALLY need to feel better!)

So here's my laundry list of symptoms:

I have stomach pain and gas ALL the time. It doesn't come and go, it's just always there. I've learned to live with it and ignore it as much as possible, figuring everyone has gas and I probably have Irritable Bowel or something. I have noticed that Japanese barley tea makes it the worse, and there's nothing in it except barley and water. Even when I was eating on a very natural healthy diet (I've tried EVERYTHING, even fasting for two weeks straight), I was drinking this thinking it was all natural and okay, and I still hurt.

Then there's the diarrhea...again I figured it was probably Irritable Bowl, but getting worse. Several times a week now for at least the past year or two, and seems I go back and forth between constipation and diarrhea every other day or so.

Then there's the pain all over my body all the time. All my joints hurt and I have to be SO careful how I sleep or sit or anything. Wakes me up several times a night, etc.

I've always had good teeth, until my last trip to the dentist. Imagine my surprise when they told me I had no less than five cavities! .

I'm always tired. I knew inside that I'm always tired-er than everyone else, but I didn't have an excuse to be, and didn't want to be lazy, so just push through most of the time. After all, everyone's tired right?

Then there's this horribly ichy rash I keep getting all over my bottom. I can't help but scratch it until it bleeds.

Infertility is a biggy. We've been trying to have our third child for five years, and it just didn't make sense how we could have two and then no more.

Irritability and depression...well, we're all irritable and depressed, right? Haha!! And I'm a Christian, so it would be wrong to be depressed (rolling eyes)!...Woman up, Sistah!!...(This is my recurrent lecture to myself! Ha!)

Have I mentioned the peripheral neuropathy? How my hands go numb at wierd times, etc. Constantly! It's so annoying!

Okay, I could go on, but you're probably all snoring by now, and I think I got the worst ones anyway. So please tell me what I should do now!! I need some sort of direction from someone who knows more about this than I do! Do you think I have celiac? I've gone gluten free for two days, but I just don't know if that's the right thing to do. There are no gluten free products here, and my diet is going to be EXTREMELY limited. I just don't know how I can do this, but I'm afraid of the damage I might be causing by continuing to eat it and I'm kind of thinking it might be pretty damaged already.

Any advise would be hugely appreciated!!

Beth

[missy'smom]

Beth, Foreign Buyers Club has gluten-free stuff available. Their website is in English and Japanese. Open Original Shared Link

We used this company to order stuff like gluten-free shoyu, tonkatsu sauce, panko and miso when we traveled to Japan. Open Original Shared Link Japanese only.

We cook some Japanese at home with products that are available in Japan as well as the states. It's not insurmountable to obtain gluten-free shoyu, mirin, dashi and sake-the staple ingredients of Japanese cooking.

I don't have an official DX but will never ever ingest any amount of gluten as long as I live. It is so clear that this is what my problem is. Perhaps the Lord is leading you to the answer through your friend as he did for me through a casual conversation with a GI doc. who was not my own. I was in a situation where testing didn't present as an option. gluten-free is doable in Japan. It's a challenge here too but we stick with basic things that God provided for us-fruits, veg. meats. Thank goodness for bentos too! I took them everywhere when I was visiting Japan and out for the day and take them everywhere here in the states too.

Don't beat yourself up for being depressed. This disease and others can cause it and we can't control that. If I ingest gluten it triggers depression. It's similar but different from reg. old depression(I've had that too and can tell the difference now). It's a physical thing that my body does. Can't help it. Just acknowledge it-OK I got glutened so now I'm depressed and have to hang in there until it shuts off-usually a few days and the switch just turns off and I'm back.

If you have the rash and if it is DH-Dermatitis Herpetiformus(sp?), a doc. may be able to prescribe a cream that may help. That could also be a ticket to a diagnosis-if they biopsy it you can get a Dx that way.

The doc. that pointed me in the right direction lives in Los Angeles and if you are interested in contacting him and asking him for a recommendation for a doc. in Japan you can P.M. me and I can give you his contact info. He was born, raised and educated in Japan so I'm sure he keeps in touch there.

[LDJofDenver]

Hi again, came across this (YouTube) and thought it would be of some help trying to go gluten free in Japan:

That same person has a couple others as well, just search for "gluten-free Japan" in YouTube.

[missy'smom]

LDJofDenver, thanks for that post. I learned something new.

[Bethinjapan]

Wow! Thank you guys so much for all of your great suggestions!! Unfortunately, going home is not an option at this point, per my sweet hubby's sad shaking of the head. I had heard of the co-op, but hadn't looked into it, so that was a great reminder! And I will definitely look into the kits. That might be an option. Also, thanks for the name of the doctor in Yokohama. That's a trip we could make, so I'll definitely send him an email.

Beth

[Fiddle-Faddle]

Whatever you do, I think you need to do it as soon as possible--you have obviously suffered a LOT of damage, and if gluten is what's causing it, you need to get it out of your system ASAP. People with long-term damage don't always heal 100%, and the odds are better, the shorter the term of damage.

There are also other problems that may cause similar symptoms, especially Lyme disease, so that's worth looking into, as well.

Less than half of those already diagnosed with Lyme ever had the famous "bull's-eye" rash, and a hefty percentage could not recall ever having been bitten by a tick. So please don't be quick to dismiss it as a possibility--a couple of years ago, there was a shockingly large percentage of celiacs/gluten intolerants on this board who were diagnosed with Lyme as well.

And the confusing thing is, Lyme can CAUSE gluten intolerance. And joint pain is almost universal amongst Lyme patients.

Again, this is a condition where, the longer you wait, the more difficult it is to heal the damage. Your sweet husband might be sadly shaking his head--but your health is seriously at stake here. We're not talking about the common cold, we're talking about either celiac disease, which is associated with a host of potentially devastating autoimmune conditions, or Lyme disease, which can be extremely difficult to treat when left untreated for a long time, and can be just as devastating, if not more so

There was also at least one person here a while back who had a severe autoimmune reaction to the mercury amalgam fillings she received. You mentioned 5 cavities--what was used to fill them? (Though, as you observed, celiac causes dental enamel problems.)

And there are probably other possibilities as well, that I haven't thought of, but others will!

Best of luck to you--please keep us posted!