New here, my story (LOOOOONG)

[Nerve_Wrecked]

Well, hello.

Where to start....

Ok, so about 3 years ago I started having "weird symptoms" a month after my youngest child was born. Shock like sensations in my leg...this progressed with more and more "weird stuff" (more shock like pain, muscle spasms, fatigue, reduced sensation, etc), over the course of 3 years, until around this past summer. I went through MRI's, CT's, multiple blood tests, x-rays, ECG, muscle relaxers, nerve pain meds, multiple doctors and specialists. Then this past spring/summer I started getting pain in the rib area. My doc at the time put me on Nexium for 2 weeks, which made me feel completely awful. Sick to my stomach, pain in my stomach, etc. So I stopped taking it and never went back for a refill.

So, the "rib pain" progressed slowly. Now, when I said "rib pain" I mean pain across the front, around the bottom couple of ribs. I felt sick, and sore, and ended up doubled over in pain. When it got to the point that it was happening daily, I basically stopped eating. My husband is an amazing guy, and he brought home some pot to help with the pain (neither of us are smokers, but we both felt completely desperate), so I started eating again. Celiac hadn't occurred to me (although it should have), nor had gluten sensitivity. Eventually, this rib pain was the focus of my life, wondering what was causing it, and when it would happen, and how I could make it stop. And my tongue started burning, off and on, like I had scalded it with hot coffee.

I decided to make an appointment with my new doc. I had only seen him once, and he felt all my issues were most likely auto-immune, and that we would need to sort it out (my last 2 doctors took a "wait and see what happens next" approach). I have a family history of auto-immune conditions. My mother has Grave's Disease, my aunt (mom's sister) has Rheumatoid Arthritis, my Grandmother (their mom) has Celiac, and my Grandmother's sister has Celiac. I knew my symptoms weren't "classic" for Celiac, but I decided to ask my doc for the blood test anyway. I talked to my grandmother before I did this, and she strongly encouraged me to get tested, and explained that she presented "non classically", (constipation, no pain, etc).

So I went in and saw my doctor, and asked him for the test. He simply asked me why I thought I had Celiac (no judgement, just wanted to know MY reasoning). I explained how I had been feeling, and that my grandmother and her sister both had Celiac. I told him I didn't think I had Celiac per se, but that I wanted to rule it out as the cause of some or all of my issues.

He wrote out the lab requisition, and told me as soon as I had the blood work done, to go gluten free. I had done some reading, and knew that I couldn't be gluten free for the biopsy, so I asked him if I would need the biopsy if the blood test came back positive(I have a HORRID fear of endoscopy, having had one in Aug'07 because I had lost the ability to swallow solid food for a month). He told me that due to family history, symptoms, and a positive blood test would be enough to give me a diagnosis.

So I had the blood test done last monday (8 days ago) and here I sit waiting for results. I called my doctor's office to see if they were in yet, as the lab tech told me 7-10 days, but the doc's office said another 1-2 weeks before the results come in. I have been gluten free for 8 days, with 1 exception (Boxing Day), which gave me terrible rib pain, and a burning tongue that took 3 days to completely go away. Otherwise I feel wonderful with just a little discomfort in the ribs after I eat. I still have my muscle symptoms in other parts, but I have never totally convinced that they were part of the same problem (but if it turns out that way, that's AWESOME).

I feel like the only person on the planet who would jump for joy with a Celiac diagnosis. Although being gluten free has definately made a difference, and I will continue it no matter what the test says.

But after alllllllllllllllll this, I have a couple of questions for anyone who may know....

1) is residual pain common when you first stop eating gluten?
2) how "neurotic" are you when it comes to avoiding gluten? Do you ask them to change their gloves at Subway, when you go in to get a salad, for example?
3) has anyone else had tongue burning in association with Celiac or gluten intolerance?


That's about all I can think of to ask for now.

Sorry this is so long.

Thanks for reading

Christine
(gluten free since Dec 22'0


P.S. I have the sort of luck that now that I have joined the site, and posted my story, my test will come out negative....lol thanks a lot for that guys LOL
_________________
"Weird Stuff" since November'05

[celiacmaine-iac]

Hi Christine! Welcome to the board!

[mrsppmrxky]

Welcome to the board. I am so sorry that you have been so ill.

In answer to your questions. I have other foods that burn my tongue at times. I have noticed lately that bananas will burn my tongue. You may have other sensitivities going on. you might want to start a food journal and write down what you have eaten and the symptoms that develop.

If you get a negative result on the Celiac disease, you might be gluten sensitive and still need to avoid gluten.

When you get your results back, there should be someone on here that can help you go through the results and help you decide if a full panel was done or the bare min. tests were run.

I have horrible rib pain. I have costochondritis. It is an inflamation between the ribs and I think the lungs and rib cage. Sometimes it feels as if I am being squeezed to death. My dr. gave me pain pills and Lidocaine patches to wear to help with the pain. (I can't take inflamation drugs due to allergies)

I have a hard time swallowing. Bread seems to be the worst offender. It is like a weakness in the esphogus muscles not contracting like they should.

Have any of your doctors mentioned fibromyalgia? You might want to look it up and see if you have the tender points. This has nothing to do with celiac disease, but many people seem to have lots of auto immune problems rolled into one. (I also have thyroid issues and osteo) The MG that your aunt has also needs to be looked at to see if you present with those issues.

I hope that you are able to soon get to the bottom of your health issues. Keep your chin up and take it one day at a time. If you feel better being GF, then I would stay GF no matter the results of the blood work.

You can never be too careful in avoiding gluten. If I go out to eat, I ask for gloves to be changed. If I only get French Fries at Chick Filet, I do not touch the salt and pepper shakers. I use a napkin to hold them. I learned the hard way from touching the salt and the ketchup container one time before. I nearly embarrassed myself at WalMart 10 minutes after I left the Chicken place. I thought for sure they were going to have to call an ambulance for me and cart me out of the ladies' room. I almost passed out from the horrid cramps that came on.

I mostly only eat at home now. If I do go out, I am super careful in how my food is brought to me.
_________________

[Nerve_Wrecked]

Thanks so much for the input!

I do for sure have a lot of allergies, mostly they are "new" though. In my adult life.

Antibiotics are the worst. I only know of 1 I can take, and it's not bread spectrum. I also get a bit of an upset stomach from most raw fruits and veggies, so I tend to only eat them if they are cooked.

My aunt doesn't have MG, but RA (lol auto-immune no matter the name). I intend on staying gluten free despite the results of the test. All I know is on the lab requisition, my doc asked for "Celiac test", under "other", since there was no spot for it.

My grandmother and aunt also have Fibro, and although through the 3 years that's one of the many "diagnosis" I have had, I don't think I actually have tender points (the doc who "diagnosed" me with it never laid a hand on me).

My chin is up, although honestly I mostly fear this test being negative. Positive I am ready for. Gluten free really hasn't been as bad as I thought it would be, the worst of it has been that we weren't prepared for a gluten free diet, and didn't have the money to go out and get a bunch of stuff to support it, but we are doing that tomorrow.

Also, I wanted to say that I meant no offense when I asked how "neurotic" people are in avoiding gluten. Mostly I have been trying to sort out, for myself, what lengths I should go to. I suppose a lot of that will depend on test results!

Thanks again for all the helpful info.

Christine


PS. My burning tongue actually started about 20 mins after eating waffles, I hadn't had anything else at all, aside from syrup. It was really strange. I had noticed the burning tongue on previous occasions, and had been thinking maybe I had thrush, but it suddenly stopped so I didn't sweat it (also I didn't see any signs of it in my mouth).
_________________
"Weird Stuff" since November'05

[celiacmaine-iac]

[Nerve_Wrecked]

Thanks, I already AM feeling better than I was. I'm not perfect, but I feel a lot better. Even my husband has noticed that I seem to be in a lot less pain, my energy's up a bit (fatigue has been a killer for me), and I'm laughing again.

He said it best when "Even if you don't have Celiac, I would suspect you at least have a wheat allergy or something because now that you're off it, you seem to be doing WAY better".

I didn't see anything in your post that made me think you were offended, but I wanted to be sure that others knew I wasn't trying to be offensive, it's just my sense of humour is all, I'm a bit of a goof.


Christine
_________________
"Weird Stuff" since November'05

[celiacmaine-iac]

[Nerve_Wrecked]

I have lots of questions...I'll start with just a couple though....

1) Why is the sky blue?

2) How is my husband ALWAYS wrong??

LOL

Christine
_________________
"Weird Stuff" since November'05

[celiacmaine-iac]

Told you you'd fit in fine here! You're already jacking a thread, even if it's yours!
_________________
Steph

[Nerve_Wrecked]

LOL, what can I say??

Maybe I should just change my User Name to "Jack" lol
_________________
"Weird Stuff" since November'05

[Home-Based-Mom]

Just wanted to jump in here and

1) Welcome you to the forum

2) Point out that (IMHO, anyway) you can't be too neurotic when it comes to protecting yourself from cross-contamination and other sneaky gluten sources.

3) Agree that it's a good idea to stay away from Subway, Submarina (I really miss their salads) and other such places. If you don't, sooner or later you will wish you had. See point #2.

4) Try to answer your question about the blue sky. I'm not too sure about this but a guy at church has a bumper sticker on his car that says, "If God isn't a Penn State fan, why is the sky blue and white?"

5) Offer no suggestions about your husband other than it's a guy thing!
_________________
Sandi ~ learning to live in a world obsessed and infested with wheat.
DQ2/DQ8
"If it wasn't food 100 years ago, it isn't food now." Mike Huckabee
Support Operation Christmas Child

[aklap]

Hi Christine,

Welcome to the board! I don't have a great deal to add other than to say "Hi".

It may not be a coincidence that your symptoms started after your pregnancy. It's felt that there are a few conditions for CD to happen...

1) The genetic make up
2) Consuming gluten
3) A trigger - illness, infection, surgery, pregnancy, extreme stress.

Do you know if your vitamin levels were checked? Vit. D, E, A, K, B12? What about iron? Vit B12 deficiency has many neurological symptoms - which it sounds like you have several.

Also, do you know what celiac tests were ordered? You might check out Our Thread on Celiac Blood Tests & More Diagnostic Info.

[Nerve_Wrecked]

Thanks Al!!

I had a friend who explained the blue sky thing once, but I forgot...lol

I know that my Vitamin B12 was checked (and registered fine I believe), as has my iron been (no issues there either, at least in the past). I am not convinced that all my neuro symptoms are related to the stomach/rib pain, but nor am I in a place to say they are not. There may be more than 1 thing going on, who knows. I figure some time on a GF diet will ultimately give me that answer. If not, well I can handle the neuro stuff if I can eat without pain.

I honestly have no clue what was ordered. The lab requisition simply showed the box "other" checked, and under that my doc wrote "celiac test".

The benefits that you state about living with CD (as opposed to other illnesses), are a huge thing for me. I am terrible about meds, firstly in my ability to take them (many medication allergies) and secondly in my remembering to take them. If I can live a life without having to be loaded up on drugs, I'd be all the happier.

As for the waiting, it won't be particularly short. I suppose in the grand scheme of things, it's not horribly long either, but it seems like forever. I have been advised that I should expect to wait 2-3 weeks from when I had blood drawn (Dec 22) to have results.

And I suppose you're right. My hubby isn't always wrong, just 95% of the time LOL

Thanks everyone for your input!

Christine
_________________
"Weird Stuff" since November'05

[mrsppmrxky]

Christine,

Did I understand you to say that you do have Fibro? If so, I would almost say for certain that is where the rib pain is coming from. I bet that it is inflamed in that area.

I personally get this pain a lot of the time. Right now, I am trying to decide on if I need to do a patch or to take a pill for the rib pain.

Keep a check on the symptoms you are having. CD is not always just a pain in the gut. It can cause a whole host of reactions. One of the nurses in our support group is having to take PT to learn how to walk. Her neurological symptoms have affected her ability to balance. The last time I saw her, she was having to lean heavily on her husband's arm for support. We all get a case of the dropsies around here when we become overly tired. We can't hold on to things in our hands.

you might still want to keep a journal so that you can post your progress and how the daily symptoms go so that when you return to the dr., he/she can read the entries and have a further evidence on how to proceed in either rolling it all into the CD category or other issues you might be having.
_________________

[cruelshoes]

I do not advocate this, but is you are still choosing to self medicate, you should be aware that some types of rolling papers do contain gluten. Just one more thing to be neurotic about.
_________________
-Colleen

Diagnosed 8/05 via bloodwork and biopsy
11-YO son diagnosed 11/05 via bloodwork and biopsy