I'm Unsure And Feel Terrible. Help

[JaneLovesHappy]

I'll try to keep this short but I kinda feel like crying because I don't know what to do.

Background: I had Graves' disease when I was 17 but after a thyroid storm they ablated it and a year later I had hypothyroid. We are currently getting it back on track (last test was a few months ago and tsh was 800. Yeah I felt like crap)

This whole year (maybe a little longer) I've gotten progressively worse symptoms with passing out with diarrhea or at least EXTREMELY light headed with it, vomiting even though not actually sick (like a flu) and just bloated gross horrible feeling. A lot could have been my thyroid but hypothyroid issues usually made me constipated. Not diarrhea.

I started working out (and being totally honest, not as regular as I should have. At all.) but I went from a size 16 in May to a 10 in October. I've lost about 43lbs.

Then I went paleo. Just to try it, as I had heard good things about it. Wow. I felt AWESOME. No gluten ingested. Just lots of veggies, fruits nuts and lean meats. Sometimes dairy (plain Greek yogurt and gluten free stuff on "off" days.

Bloating, diarrhea, etc all symptoms disappeared.

I just started Les Mills Pump and t25 with my hubby and I wanted to really follow it so I ate the meal plan for the last three days.

Things like bread and gluten-y things I haven't had have been ingested the last 72hrs.

The first day I felt like I was getting sick. Kinda like a head cold. Day 2 started feeling nauseated. Then 2 hrs ago I woke up shaking like I'm running a fever, vomiting, sulphur burps are back from earlier this year, diarrhea. Stomach pain!!! OMG. Woke up hubby and he went out to buy me pepto. I drank it and vomited some more. Two hrs later sulphur burps are gone. Stomach is -eh. Still feel nauseated. Not comfortable enough to sleep for sure.

Ya know. Something just came to me: 4 years ago when my thyroid was off again, my really awesome doctor ran full panel for other autoimmune diseases (including celiac). He said that people who suffer from one autoimmune disease can be susceptible to getting another. It was negative then. He said hypothyroid can mask well other autoimmune diseases.

On other labs he does when he checks my TSH:

I've had low potassium and had to supplemented, anemic at some point, very low vitamin d that had to be supplemented. I'm wondering now if they're actually all connected.

We are waiting on getting insurance. Hubby has a new job and I haven't had insurance all of 2013. My doc gives me my synthroid free but I'll need to get a checkup soon to get it again. I can't afford to go to the doctors out of pocket.

The thought of having to intentionally eat gluten filled foods to get tested (and I don't know WHEN I could get tested. Might still be a few months) sounds terrifying and agonizing to me. Is it absolutely imperative? Could it be celiac? "Just" a gluten intolerance?

Oh something else. Not sure if it's related at all but I figure it can't hurt to mention. I keep getting this weird rash on my face. I think it's a rash. It's like scaly dry red patches on my forehead and eyebrow area and a couple tiny spots on my cheeks by my nose. It's kind of embarrassing because family members ask what's wrong with my skin. It comes and goes but I haven't monitored it at all. It flares up.

I don't know anymore. Thoughts? Get tested and eat the gluten filled foods once I have insurance? Just eat gluten free and go on about my life? I just know that tonight was one of the top 5 worse sick moments this year related to my stomach.

[Bella11]

It's obviously easier to be diagnosed celiac if you are eating gluten but if you've already stopped, the best bet is a genetic test.  If that test comes back negative then you know you can't have celiac disease (though you might still have an intolerance or allergy.)  If it comes back with a result indicating you have at least one of the genes you MAY get celiac disease but may never.  

 

The skin rash combined with your vitamin/mineral deficiencies suggest you MIGHT have celiac disease.  Best to discuss with your Doctor. Some Doctors don't know much about these issues so if you are not satisfied with the first opinion, get another one. I was lucky to have a Doctor who specialises in nutrition so was diagnosed quickly.  It's great that your Doctor quite rightly suggested the correlation between having one autoimmune disorder and others, as it is often the case.  If you are genetically susceptible but do not have celiac disease at this point you might want to be re-tested from time to time (say every year unless you have symptoms in the meantime).

[greenbeanie]

Welcome to the forum! I'm sorry you're feeling so awful! I don't know much about thyroid issues, but I have heard that sulphur burps sometimes indicates giardia infection. I was recently tested for that myself and was negative, but my doctor said it's the kind of thing that can become chronic and flare up from time to time if untreated. People can get it from contaminated well water, swimming in lakes and inadvertently swallowing a bit of water, working in daycare centers, etc. A simple stool test can check for it (though my doctor said the test can sometimes miss it), so it might be worth looking into that if you haven't already been tested for it. My doctor specifically asked if I had sulphur burps when she was talking about it (I didn't), so apparently that can be a telling symptom. Maybe other things can cause sulphur burps too - I don't know.

I hope you're able to get to the bottom of things soon. There are a lot of people on here who seem to know a lot about thyroid issues, so hopefully someone will have advice about that.

[JaneLovesHappy]

Thanks for responding. I still feel pretty yucky. I forgot vitamin b deficiency also. My doc had to give me a few shots to jump start it and then I was supplemented.

Yeah he's a great doctor. Took me a few years to find an awesome one here. He REALLY listens I just have to wait on insurance. He did mention after it came back negative for all other autoimmune diseases that he would test me from time to time because of the risk.

Only 1 year ago did I finally get some family history. My mom was adopted and her family-our blood relatives- found her in Facebook. All I know is there are a lot of cancers in my family (brain tumor, lung cancer and leukemia) I'll ask if anyone has celiac.

I'll probably call my doctor today and see what they say.

Thanks again!

[JaneLovesHappy]

Um. Ok I just got off the phone with the doctors office. I can afford to see the doctor but they're not sure how much testing would be without insurance or what tests they'll need to run...so I might have to wait a month.

Do I keep eating gluten? That's a scary scary thought right now. :-(

[NoGlutenCooties]

In my opinion, while it would have been best to get the Celiac test before going gluten-free, if you have the severe reactions you describe I wouldn't do the gluten challenge just to get confirmation.  You had a laundry list of symptoms that went away on a gluten-free diet.  You reintroduced gluten and your symptoms came back with a vengence.  If you go gluten-free and they again go away then you have your answer (again - just my opinion).  If you still get some of your symptoms then it would be best to keep getting tested for other possible conditions.

 

Something else to consider... you could put yourself through the gluten challenge and still have the tests come back negative.  The tests aren't always accurate - or you could have non-celiac gluten intolerance in which case the tests for celiac also come back negative.  The end result would be the same... you'd go back to a gluten-free diet so that you feel good again.

[JaneLovesHappy]

I think that's what I'm going to do. I just had a long chat with my husband about it and he really thinks that intentionally eating food that makes me sick to do the testing isn't a good idea for me. Especially when I was symptomless for months completely gluten free.

Thank you all for your input. The nurse from my doctor just called back. She had a chat with my awesome doctor and they also think that I just shouldn't put my body through it.

[GFinDC]

Hi Jane,

 

Some people with celiac disease get Hashimoto's Thyroiditis.  They say women get it more often than men.  Women get chocolate more often than men too, so I guess it balances out!  Well, maybe not.    But back to the serious stuff.  Hashimoto's is an autoimmune disease that attacks the thyroid.  I wonder if your doctor tested you for it?

 

There are some natural/non-doctor treatments for hypothryoid that might help you.  One is Armour thyroid, another is Natural Sources Raw Thyroid.  I think the cost is much lower than the big pharma meds too.  If you want to try the natural route, I suggest the Natural Sources product.  Try taking one capsule twice a week.  There are plenty of different places to buy it from, but including one link for info.

 

Open Original Shared Link

 

It might be a good idea to let your extended family know about your possible celiac disease.  They could go get tested for the gliaden antibodies now before going gluten-free.  It's important to get the testing done before stopping gluten as the antibodies decline on gluten-free diet.  That makes the test useless.

 

Since you have had some vitamin deficiencies it is more likely that you have celiac disease IMHO.  A bone density scan is also helpful as many celiacs have lowered bone density due to malabsorption.

 

There is a skin condition some celiacs get called dermatitis herpetiformis (DH).  Sometimes the people with DH don't show up on the regular antibodies testing.  Probably because the antibodies are mostly in the skin instead of the blood.

[JaneLovesHappy]

I have had hashimoto thyroid for about 10 years or so. It started as Graves' disease. I was gluten-free for three months and only started eating gluten again 3 days ago.

[1desperateladysaved]

I am sure glad you are checking into celiac.  My symptoms at diagnosis, bloating, brain fog, extreme fatigue. One can also get thyroid troubles I have heard here on the forum.

 

I got diagnosed by genetic testing, nutrient levels, symptoms at diagnosis and by the testimony I gave the doctor of my reaction to a gluten free diet.  I guess this was kind of unusual to be diagnosed this way, but it worked for me.  After 30 years, I am better.

 

D

 

 

[GFinDC]

I have had hashimoto thyroid for about 10 years or so. It started as Graves' disease. I was gluten-free for three months and only started eating gluten again 3 days ago.

Happy New Years Jane!   What you described as far as graves turning to hypothyroid is common.  The thyroid gland releases extra thyroid hormone while it is under the antibodie attack.   When the thyroid is no longer able to produce enough thyroid hormone (due to damage) it ends up causing a hypo-thyroid condition.  Sometimes people go back and forth between hyper and hypo symptoms as the damage progresses.  Also sometimes people report improved thyroid function after being gluten-free a while.  It seems to depend on how much damage is done before going gluten-free, and if the thyroid antibodies subside after going gluten-free.  This is all from what other users on the forum have reported.  And it doesn't work out the same way for every person. It varies.

 

But I do know that hypo-thyroid symptoms can cause a lot of misery, and it is worthwhile to get them treated somehow.  Either through regular medical doctor treatment or more natural treatments, both can help.  One is a lot cheaper than the other tho.  I hope you feel better soon and have a great new year!