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Trying To Figure This All Out


lgreg

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lgreg Newbie

In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!


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Guest cassidy

It certainly couldn't hurt to try a gluten-free diet. A lot of us have been in the same position with doctors. If you try gluten-free, I would stick to a basic diet that is naturally gluten-free, like meats, fruits and veggies. If gluten is your problem, it will take your system time to heal. I didn't start feeling better at all for 2 weeks. After that I had good and bad days for a while. Now, 3 months in, I'm doing very well and have adjusted. Good luck figuring it out, I know it can be tough!

Rachel--24 Collaborator

It doesnt sound like you've been tested for Celiac so why not go ahead with that before changing your diet? You need to be eating gluten in order for tests to be accurate so once you start the diet you can no longer have those tests w/out going back on gluten for several weeks or months. Maybe schedule with a different doctor since you didnt like the one you saw...push for the Celiac panel (make sure its the whole panel) and get the tests done. Then start the diet and see how it works for you. Even if the tests are negative the diet may be your answer. If I were in your shoes I'd do the bloodwork so as to not have unanswered questions later on.

Guest webleybg

Do you live in a small town? I have found that I have to really push to get the right testing done. I live in a small town, and when I was first diagnosed my Dr. had spent a whole YEAR testing me for bacterial infections - ghiardia - ulcers, and more. She even tried to diagnose me with "Irritable Bowel Syndrome", and when I wouldn't back down she finally said she would try something else. She happened to test me for the Celiac blood panel, and I found out the only reason she did that was because a Dr.'s wife in her office had been diagnosed the year before. Otherwise she knew nothing about it (I'm grateful she tested me though). Anyway, my recommendation is don't back down! Good for you for hanging in there & keep doing so even when you feel like they think you're making everything up - just keep at it until you get a response. I have learned the hard way that Dr.'s don't always know what to look at, and sometimes are too quick to make a generic diagnosis. It doesn't mean they are bad at their job, but some need encouragement or even help from the patient in order to make the accurate diagnosis. If they diagnose you and you feel that the diagnosis is inaccurate then you have to speak up about that too! GOOD LUCK! ;)

Lillyth Explorer
In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!

Those are the same symptoms I had/have. I had no idea what was wrong with me.

Then my husband & I went on a fast together (pre-wedding, to flush out all the "bad stuff" we didn't want to take with us into the marriage), and blammo! I had a peice of ravioli & immediatly had a headache, felt exhausted, etc. I didn't look back after that.

(I thought at first it was a wheat allergy & started eating spelt, kaut, etc., but I was still tired all the time. So I'm now on another fast to get that gluten out.

Like the others suggest though, I'd do all the tests now, while you're on gluten - when I went to the doc this morning, there were tests she couldn't do becuse I no longer eat gluten. But after the tests are done, I'd go gluten free for at least 3 weeks, then have a peice of toast. I knew within 20 minutes of eating wheat - but I don't know if that's everyone.

Good luck, and I hope you get this figured out soon! (It's the pits not to know)...

Lillyth

lgreg Newbie

Oh wow,

Thank you all for your GREAT responses! I didn't even think (duh) about not being able to be tested for Celiec if I put myself on a Gluten Free Diet!

Yes, I live in a very small town, this doctor is about an hour away in a larger town and I chose her based on her bio.....obviously she had someone write it for her!!!!!

There is a naturopath in town that I have a call in to, and need to see if my insurance will cover him I think a naturopath will be more in tune with my personal philosophies, and be much more proactive than mainstream physicians.

I just got my work schedule for the next few months, and will be traveling a lot in June and July, so I need to get myself healthy and strong again. I also will be working caterers hours....so stamina will be key. I am bound and determined to get to the bottom of this!

Again, thank you all.....I will keep you informed!

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    • Ann13
      Not everyone will be allergic to whatever they're using in food. There is another forum re people who are posting they have vocal cord & throat issues after they eat breads & pastas which stopped after they removed those foods from their diets. Same as me...gluten doesn't react as gastrointestinal it reacts orally. Which is why I'm saying ensure all your food isn't what you're having a reaction to.  ...& I used Cornflakes as an example because some gluten free people would assume it's gluten free but if they're allergic to barley they will have a reaction...nothing to do with their inhaler.  You're missing my points a lot & frustrating so I'm done commenting. You really need to ensure your food isn't what's causing the issue. I am checking with symbicort manufacturer to check their ingredients.  Good bye... I'm done with this. 
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      I certainly agree with all that. However, you also mentioned cornflakes with barley malt but that would obviously not be gluten free since barley is a gluten-containing grain. And the chemicals they spray on grains would affect everyone, not just those with gluten disorders. I'm just trying to figure out what this thread has to do with the main subject this online community is focused on. Is the point of this thread that having a gluten disorder makes someone more susceptible to reacting adversely to inhalers? That could be but it may have nothing to do with the inhaler having gluten. It could have to do with, say, having higher systemic yeast counts because the celiac community generally suffers from gut dysbiosis. So it would be easier for celiacs using inhalers to develop thrush.
    • Ann13
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    • trents
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    • trents
      Are you saying you believe there is gluten in the inhaler products? I mean you talk a lot about reacting to foods that are supposed to be gluten free but this thread is about inhalers. 
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