Can I Have A Nervous Breakdown Now?

[BabsV]

So, I've been living on Poland since my diagnosis which has not exactly been great -- doctors don't seem to know anything about Celiac Disease, I've had major problems with food quality (why hey, I had no idea that you inject your chicken and turkey with additives that contain gluten 'cause the food labeling is bad to non-existent!), can't even attempt to eat out because wheat and barley are EVERYWHERE in a Polish kitchen and the chefs have no idea what gluten is, etc.

I was getting really excited because we are slated to leave in June with a return to the United States. The downside was my husband (Foreign Service Officer) was headed to Iraq in August for one year...wasn't exactly keen on being separated from him and being a single parent but he volunteered feeling it was something he needed to do.

Yesterday evening we find out because of budget cuts through Congress the job he was going into no longer exists...they *might* be sending him to Baghdad but that isn't confirmed. There's talk of an immediate transfer to Windhoek, Namibia?!?!

I think my brain is going to explode. I was counting on at least a year back in the States to see some doctors who have some clue about Celiac and who might take my abdominal pain issues seriously. Also, being gluten-free in Namibia?!?! Wahhhhhhh!!!!

Celiac has really knocked me down in so many ways and I'm still in less than ideal shape. This is so so so frustrating. If not for the fact that I'm tired and in pain I'd be dealing with this much better but today I just can't.

I know it will all work out but the fact that Celiac could impact my husband's career just pisses me off right now.

[JNBunnie1]

Holy crap.

Um, can I ask how you were diagnosed? And what the ongoing issues that need a doctor's care are?

[IrishHeart]

Celiac has really knocked me down in so many ways and I'm still in less than ideal shape. This is so so so frustrating. If not for the fact that I'm tired and in pain I'd be dealing with this much better but today I just can't.

I know it will all work out but the fact that Celiac could impact my husband's career just pisses me off right now.

Sorry your plans are being disrupted, Babs. I know you are planning on seeing Dr. Fasano. IMHO, you MUST keep this appointment. You have issues that need attention. You are suffering.

The fact that you are NOT doing well is the very reason you should also consider if living abroad is contributing to this problem.

I am grateful for your husband's willingness to serve our country and while I applaud your willingness to do everything to advance his career, I will play "devil's advocate" just for one moment-- so you can view this from another angle.

It is admirable that you put your husband's career first.

However, this begs the question--

What about your health?

If you do not feel well and do not get to the bottom of what ails you and if living in foreign countries is keeping you ill and perhaps not putting the disease into remission, what purpose does that serve?

Celiac is not something we asked for and this is not "your fault".

It just is what it is. If it were (God forbid) cancer or some other disease, would that make a difference? Would it be "more important" to make it the focus?

Celiac is no less life-threatening, if it is not treated properly.

Just offering a different view point, not trying to interfere in your relationship. It's none of my business, of course, but you did put it "out there" --and from my perspective, having been struck nearly immobile with this thing for years-- your health should come first.

Otherwise, the "woman behind the man" thing (as noble as it is) will fall to pieces if you incur further AI diseases or other complications.

Take care of you, even if it means being separated briefly? Just "thinking out loud with you"

Offered IMHO, of course.

[ravenwoodglass]

Can you come back to the States and get your health issues sorted out and then rejoin him where he has been transferred?

[MitziG]

Seconding what Irish Heart says. A career is important, but so is a marriage, and your life.

Your husband should be doing some serious rethinking of HIS priorities in my opinion. If ones mate is suffering from a debilitating disease, surely the military will make some concessions as to assignment?

[frieze]

I understand that spouses are important in the officer corp. That being said, you need to be in top shape to make those important contributions to his advancement.

[BabsV]

Holy crap.

Um, can I ask how you were diagnosed? And what the ongoing issues that need a doctor's care are?

Had positive bloodwork in Poland. Repeated bloodwork in US while on vacation then was biopsied (positive) before returning to Poland.

My main issue right now is severe abdominal pain...the brain fog, dizziness, tremors, brittle nails, weight loss, etc. have all improved. Still having sleep issues but that could be related to stress and/or vitamin deficiencies but the doctors won't test me for them. They just say, "Don't drink beer, you can eat potatoes." Seriously, that is the sum of their knowledge of Celiac. The Embassy doctor is nice but totally unaware of Celiac and since he covers a bunch of different Embassies in the region and travels often it isn't like he has time or inclination to do any sort of in-depth research.

I've got an appointment with Dr. Fasano at the University of Maryland Center for Celiac Research on July 31st -- hoping he and his team may be able to shine some light on my pain issues. If nothing else, they can tell me what hasn't been done in terms of testing that should have been done!

[BabsV]

Yikes, I realize looking at my original post that it sounds like my hubby is all "go go go" career-wise. That isn't the case. Before my diagnosis last summer he was pushing for our curtailment of this tour and return to the United States since none of the doctors were taking it seriously -- they labeled me as "failure to thrive" and put me on anti-depressants. Seriously. I am petty so took great pleasure in waving the positive blood work in their faces and saying, "Hey, it wasn't all in my head. I really am sick." We were told being gluten-free is "easy" to do here in Poland -- that was from doctors who turned out to have no real knowledge of Celiac plus people have seen "gluten free bread" in the shops here so of course I'd have something to eat. Yep, that's what they thought.

He is 100% behind me...he's said if I need to go back to the States for any period of time (a few months, a year, 2 years, forever) that is the priority. Ideally we'd all be together but to be honest, with the world situation the way it is, there are more and more posts where families cannot go with the Foreign Service Officer. We knew sooner or later it would affect us.

He has said no job is worth sacrificing my health (life) for. I was just kind of having a melt-down earlier today. Blame it on lack of sleep last night since we got the news about the Iraq job at about 8pm and my mind was racing all night trying to come up with all the different variables of how this could work out. Besides, I've been mentally/emotionally preparing myself for my husband to go into a dangerous situation and now to have it become iffy just freaks me out. I want to know one way or the other. ARGH!!!!

As it stands now, I leave Poland on June 19th to go back to the States. Will have almost 6 weeks at my mother's house (this is a good thing) to rest and try to get some energy back. Then I have my appointment with Dr. Fasano on July 31st and we'll see what he says and then move forward accordingly.

[IrishHeart]

So happy to hear hubs puts your health first.

( It was not clear in your initial post.)

So you see, your celiac sisters jumped all over this topic in defense and support. :lol:

We're a loyal bunch, if nothing else.

[BabsV]

So happy to hear hubs puts your health first.

( It was not clear in your initial post.)

So you see, your celiac sisters jumped all over this topic in defense and support. :lol:

We're a loyal bunch, if nothing else.

And I love you all for it! When I'm down I know I can come here and you'll all understand and be supportive. I feel so lucky that I've got this community!

[JNBunnie1]

Had positive bloodwork in Poland. Repeated bloodwork in US while on vacation then was biopsied (positive) before returning to Poland.

My main issue right now is severe abdominal pain...the brain fog, dizziness, tremors, brittle nails, weight loss, etc. have all improved. Still having sleep issues but that could be related to stress and/or vitamin deficiencies but the doctors won't test me for them. They just say, "Don't drink beer, you can eat potatoes." Seriously, that is the sum of their knowledge of Celiac. The Embassy doctor is nice but totally unaware of Celiac and since he covers a bunch of different Embassies in the region and travels often it isn't like he has time or inclination to do any sort of in-depth research.

I've got an appointment with Dr. Fasano at the University of Maryland Center for Celiac Research on July 31st -- hoping he and his team may be able to shine some light on my pain issues. If nothing else, they can tell me what hasn't been done in terms of testing that should have been done!

I'm glad you have an appointment with Dr Fasano. Is the abdominal pain constant, dull, throbbing, shooting, local, widespread, after certain food, diarrhea, reflux? Just trying to help you pin it down, constant pain is NOT normal, and no fun!

[deb445]

When you mentioned Poland, it reminded me of shopping recently at our local grocery store (Canada) and reading the ingredients of bottled beets (from Poland), and the label indicated that the fructose? (I think it was fructose) was rerived from wheat. I remember being surprised - these were not "pickled" beets. Sneaky, sneaky wheat.

[Lisa]

As it stands now, I leave Poland on June 19th to go back to the States. Will have almost 6 weeks at my mother's house (this is a good thing) to rest and try to get some energy back. Then I have my appointment with Dr. Fasano on July 31st and we'll see what he says and then move forward accordingly.

Sounds like a GREAT plan!

[BabsV]

When you mentioned Poland, it reminded me of shopping recently at our local grocery store (Canada) and reading the ingredients of bottled beets (from Poland), and the label indicated that the fructose? (I think it was fructose) was rerived from wheat. I remember being surprised - these were not "pickled" beets. Sneaky, sneaky wheat.

Wheat is everywhere here in Poland -- what boggles my mind is all the meat and meat products that contain gluten?!?! Bacon, sausage, lunch meat, hot dogs, etc. -- not that I ever ate much of that sort of stuff but I do like to make "breakfast for dinner" every once in a while and not being able to eat bacon as a treat just kills me. Even the gluten-free replacement foods include "gluten free wheat starch" which is allowed under EU regs (it measures at less than 20 PPM) but the one time I had a piece of bread with it (right after diagnosis by mistake - I was still trying to figure out labels 'po polsku') it just killed me!

[BabsV]

I'm glad you have an appointment with Dr Fasano. Is the abdominal pain constant, dull, throbbing, shooting, local, widespread, after certain food, diarrhea, reflux? Just trying to help you pin it down, constant pain is NOT normal, and no fun!

The pain ranges from dull discomfort to full on intense pain -- it is hard to describe because it is not a shooting pain, more like a throbbing. Sometimes it feels as if it is swollen or inflamed inside but I have no bloating. It isn't nearly as bad now that I've been gluten-free for several months... It is mostly on the left side of my abdomen right under my ribs. Sometimes it seems more mid-line and occasionally it wanders over to the right side but I never have pain on the right without pain on the left. I haven't been able to trace it to specific foods...it isn't a reflux-type pain (I suffered really horrible GERD until I had a hiatus hernia surgically repaired). No C/D. No gut gurgle as I affectionately call it.

I am voting for trace amounts of gluten getting to me just because it is impossible to escape in this country. Or maybe another food intolerance (maybe it is too much of something which is why I can't pin it down to a specific food...?) I have asked the doctors about that and they all just dismiss the idea and tell me it is all in my head and stress-related. Or maybe gluten + food intolerance?!?!

I'm on 20mg of amitriptyline a day which helps to tone the pain down enough so I can function (sort of.) The doctor who prescribed that thinks that it is "functional abdominal pain" or pain caused by the nerves in my GI tract being super-irritated and hyperactive and sending pain signals when they shouldn't -- at least she seemed to understand that I needed something to help with the pain because I couldn't just lay curled up in a fetal position on the couch. Not really an option with a kid and a dog and a hubby and oh, a life!

[BabsV]

And I've got to say I'm in a better place today...no more meltdowns (I hope.) A good night's sleep plus finding out that there are two possible jobs for him in DC if Baghdad doesn't work out means I don't have to worry about State trying to send us someplace where I can't receive decent health care. We're going back to our house in NoVA without a doubt! Besides, I doubt they would give me a full medical clearance at this point...this is not necessarily a bad thing. Just realized that if I don't get 'worldwide' medical clearance because of the Celiac Disease all it does is knock out the really icky places that I don't want to go to anyway! See, trying to think positive. Thanks again for all your support.

[IrishHeart]

... there are two possible jobs for him in DC if Baghdad doesn't work out means I don't have to worry about State trying to send us someplace where I can't receive decent health care. We're going back to our house in NoVA without a doubt! ..See, trying to think positive. Thanks again for all your support.

I think this is all good news for you!!!

One thing I learned from being in dire straits is:

there is ALWAYS a Plan B!

a Plan C..

a Plan D...

Things fall into place.

Honestly, I am very glad to hear you are getting out of Poland, Babs. I think that pain will start to clear up when you stop getting low levels of gluten. (Just my two cents.)

Hang in there. Pain is difficult to live with, I know. Yet, it will diminish (as long as there are no OTHER problems. I have been to many specialists to rule out many things). I still think your visit with Dr. Fasano will be very interesting and I hope you will share it with us!!

FWIW, I had a long chat with my very celiac-savvy GI yesterday regarding my ongoing musculoskeletal and spine pain, weakness and parasthesia, pelvic floor pain, my abdominal muscles weak, etc. (it IS better-- but still painful) and his comment was " Listen, you were malabsorbing nutrients for maybe 30+ years? longer? It takes a VERY long time for that kind of inflammation to die down. The nerve centers were firing at a steady clip for so long. Pain pathways are created. You were impacted from head to toe. I know you are in pain, but be patient. You've come this far. You can do this. It will resolve. It may take years, but it will."

His last comment was for me not to push myself too much with weight training and exercise and "slow and steady wins the race." Yeah, yeah I get it.

That's what I hang my hat on. "It will get better."

I can take NO drugs for this pain.

(believe me, I've tried them all.) So I just wait and rehab my muscles slowly.

Oscar Wilde said "When the gods want to punish us, they answer our prayers."

Babs, for many years, I prayed for patience.

I got celiac.

You are probably "VERY patient" by now yourself.

You hang tough!!

hugs to you, IH

[BabsV]

Oscar Wilde said "When the gods want to punish us, they answer our prayers."

Babs, for many years, I prayed for patience.

I got celiac.

You are probably "VERY patient" by now yourself.

You hang tough!!

hugs to you, IH

Thanks for the kind words IH.

I have always been an extremely impatient person and this diagnosis plus recovery period is teaching me how to have more patience. I'm figuring it is some sort of karmic lesson I needed to learn and this is how it's been decided I learn it! 8-)

I've got 2 important countdowns I'm concentrating on...getting out of Poland and seeing Dr. Fasano...and since one is in 2.5 weeks and the other in less than 2 months I know I can make it. I've come this far, and while I maybe far from 100% I am definitely much much much better than I was a year ago before my diagnosis.

It is just the curve balls that life (actually the State Dept.) throws out sometimes muddy everything up!

[IrishHeart]

Yeah, those curve balls and slider sure make the ball game interesting.

Please keep us posted. And ask if you can take a pic of yourself

with the famous Dr. F. He works tirelessly for us celiacs.

....and he looks pretty cute.

[BabsV]

Please keep us posted. And ask if you can take a pic of yourself

with the famous Dr. F. He works tirelessly for us celiacs.

....and he looks pretty cute.

Hehehe. I have no shame. I'll totally see if I can get a photo with him!

[IrishHeart]

Hehehe. I have no shame. I'll totally see if I can get a photo with him!

me neither... all right, girlfriend!! I wanna see! I wanna see!!

[squirmingitch]

You can tell Dr. F that all the people on celiac.com are waiting to see the photo. And tell him that he's our hero!

Good for you! You're coming home. It won't be long (sing the Beatles song), It won't be long, yeah, yeah, yeah, yeah, It won't be long yeah!

[IrishHeart]

You're coming home. It won't be long (sing the Beatles song), It won't be long, yeah, yeah, yeah, yeah, It won't be long yeah!

Give him a big kiss from all his female fans on c.com!

"yeah yeah yeah... it won't be long... yeah!"

( I like to do everything Squirmy does)

[deb445]

So, I've been living on Poland ...food labeling is bad to non-existent!), can't even attempt to eat out because wheat and barley are EVERYWHERE in a Polish kitchen and the chefs have no idea what gluten is, etc.

Yesterday evening we find out because of budget cuts through Congress... There's talk of an immediate transfer to Windhoek, Namibia?!?!

I suspect that the only way to get better in Poland would be to eat only PURE foods? Absolutely nothing from a jar, box or tin. My boys also ask for spring water (without chlorine or fluoride) when they've been glutened, and are recovering. I wonder how "treated" the tap water is in Poland. Now for Windhoek, Namibia? What kind of fresh produce is available? Grocery stores? Markets?

[dws]

The pain ranges from dull discomfort to full on intense pain -- it is hard to describe because it is not a shooting pain, more like a throbbing. Sometimes it feels as if it is swollen or inflamed inside but I have no bloating. It isn't nearly as bad now that I've been gluten-free for several months... It is mostly on the left side of my abdomen right under my ribs. Sometimes it seems more mid-line and occasionally it wanders over to the right side but I never have pain on the right without pain on the left. I haven't been able to trace it to specific foods...it isn't a reflux-type pain (I suffered really horrible GERD until I had a hiatus hernia surgically repaired). No C/D. No gut gurgle as I affectionately call it.

I am voting for trace amounts of gluten getting to me just because it is impossible to escape in this country. Or maybe another food intolerance (maybe it is too much of something which is why I can't pin it down to a specific food...?) I have asked the doctors about that and they all just dismiss the idea and tell me it is all in my head and stress-related. Or maybe gluten + food intolerance?!?!

I'm on 20mg of amitriptyline a day which helps to tone the pain down enough so I can function (sort of.) The doctor who prescribed that thinks that it is "functional abdominal pain" or pain caused by the nerves in my GI tract being super-irritated and hyperactive and sending pain signals when they shouldn't -- at least she seemed to understand that I needed something to help with the pain because I couldn't just lay curled up in a fetal position on the couch. Not really an option with a kid and a dog and a hubby and oh, a life!

I don't mean to dash your hopes as far seeing Dr. Fasano is concerned, but I was having the same problems and he and his nutritionist didn't help at all. They were pretty hung up on the 20ppm thing and were baffled at why I was having the symptoms I had. I had that glass shards in the gut feeling, sometimes better and sometimes worse. His nutritionist gave me a pretty sophomoric speel about the gluten-free diet. She even said I could have up to an eighth of a teaspoon of gluten containing food a day without a reaction. I just rolled my eyes and got the heck outta there. Fortunately, I only had to drive about 150 miles to get there. As it turns out, they, like most in the medical profession, have no idea of what we are up against in terms of cc issues, sensitivities to levels lower than 20 ppm and all the other issues that I have gotten help from this site about. The gut pain finally went away when I gave up processed gluten free foods and took more steps to prevent cc. The silver lining is that you are using this forum to learn more about what you are dealing with. I think you are on the right track in thinking it may be cc. A whole foods diet might help. I still have trouble with occasional unexplained d, but I can say that the constant gut pain definitely is a lot better after taking some good advice from this forum.