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Guest Doll

Holy Cow! Doctor (md) Who Has A Clue! He Is Amazing!

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Guest Doll

Just wanted to give an update. I saw my new ENT doc today for "allergy testing". I am so happy I don't know where to begin. For those of you who don't know, I have been having a lot of severe trouble breathing (asthma?), and think I have developed an actual IgE "allergy" like response to casein.

When I walked into his office, he had articles on the walls with titles like: "Fish oil improves immunity", "Milk is not always doing a body good", and "Food can be your foe" among many other chemical sensitivity and food allergy articles, etc. I was floored.

These are the things that got accomplished in our 45 min(!) visit. It was definitely worth the 10 minutes extra waiting time. :)

1.) My hearing was tested prior by an audiology tech. I am sure I have fluid in my ears and am as deaf as a doorknob. :D I also have to have another test done at a later date.

2.) A full ear, nose, and throat exam was done, including the scope down the nose. During this, it was found that I have a abnormality (blockage) in my nose that will need surgery to correct. I have never been able to breathe well through my nose (I'm known as a heavy breather ;)), and obviously mouth breathing is not great for allergies. He was shocked that no doctor had ever checked this. I have not decided when to have the surgery. Probably after the wedding. I don't want to walk down the aisle looking like a war vet! I think they have to break my nose and reset it.

3.) Full RAST (I think) allergy testing will be done. He is testing for food allergies, mold, dander, etc. This has been scheduled for later this month. They fit me in, otherwise I would have had to wait until mid Sept. :)

4.) Full Celiac panel was ordered to check my antibody levels. He also ordered my ANA levels.

5.) Lung function tests were ordered (that may be awhile due to a waiting list).

6.) A sinus x-ray was ordered.

7.) Probiotics were prescribed (must order from a pharmacy in Saskatoon). I reacted when I tried probiotics before, but he wants me to keep switching brands until I don't. A multivit ("for life") as well. He predicts that I am vitamin deficient and malnourished. I agree. I was told to keep up my Omega 3-6-9 complex, which I have been taking for more than 5 years as an anti-inflammatory (I was ahead of the research at the time;).

8.) He also tested me for *candida* and has put me on a low sugar, carb, etc diet. I am sure this may be a mute idea, since we both know that any time my blood sugar shoots higher than normal I am a breeding ground for yeast. It's impossible for a Type 1 diabetic to have normal blood sugars even 50% of the time in most cases even with intensive treatment. High blood sugars can happen even if I eat salads all day. Also, I will need to consume sugar to treat my low blood sugars. But it's the fact that he actually bothered to test me for systemic yeast. I know many on here have had to go to NP's to get help.

9.) He switched me from Synthroid to pig thyroid hormone (called Amour in the US). I actually have wanted this for some time for reasons too lengthy to list here. Not many doctors still prescribe this. I am supposed to take it 2x per day, which more closely mimics the natural thyroid cycle. Only makes sense!

10.) I was told to avoid rice and almond milk. Since I have suspected IgE food allergies in addition to Celiac, his reasoning is that there are VERY large amounts of rice that go into rice milk. That high concentration and daily exposure to rice can lead to an allergy. Although, he did say that a true rice allergy would be rare. But his idea made sense. Most IgE allergies (not like Celiac) are due to increased exposure to a certain food. I am still not sure if I want to give up my cereal though....maybe goat's milk???

I filled out a very detailed questionnaire about foods I ate, family history, symptoms, etc. He's a very serious doctor (and I'm a humorous patient, so that was a little awkward at times :)) but he is a great doctor with a clue, which is all I care about. Yay!! Now if only we could clone him.....:D

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Doll,

OMG...I'm so jealous! I went to an allergist today and he totally doubted Celiac disease and kept telling me I may need to take wheat out of my diet. I told him I was on a gluten free diet, and he kept saying, "It's really a big commitment to take wheat out of your diet." He didn't get that I;m not eating ANY wheat products because they contain GLUTEN!! He was kind of an idiot! I wish I could see your doctor. ;)

Kassandra

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Guest Doll
Doll,

OMG...I'm so jealous! I went to an allergist today and he totally doubted Celiac disease and kept telling me I may need to take wheat out of my diet. I told him I was on a gluten free diet, and he kept saying, "It's really a big commitment to take wheat out of your diet." He didn't get that I;m not eating ANY wheat products because they contain GLUTEN!! He was kind of an idiot! I wish I could see your doctor. ;)

Kassandra

Hey, if you feel like moving to Regina...we ARE the place to be for Celiacs! ;) Shelly Case, RD, author, and Celiac "expert" lives here. She obviously does a lot of work educating places in the city, or at least it looks that way. We have more stores and restaurants that have gluten free stuff than I see when I go back to Winnipeg (where I'm from), and Winnipeg is at least 3 times bigger.

I know I am lucky, and I wish everyone could get a doctor with a clue. :(

I guess fate played a role..I met my fiance in Winnipeg, he was orginally from SK. I develped Celiac, and he had to move back to Sask. for his job. I moved to SK a year later for school and to be closer to him. I now live in one of the best places in Canada (I think) for Celiacs. Hmmm...makes you wonder.....Fate? God? :D

We can market ourselves here in Regina as a "Celiac's Heaven" hehe.... :D

P.S. I am sorry to hear your doctor is braindead. I always suggest to say that Celiac, wheat allergies, etc. whatever you want tested is in the family (officially diagnosed). That gives them a reason to suspect it and test you at the very least. If someone were to come to me and say they feel better gluten-free, then I would support that. I *would* still test them though, in case something else is going on (some people have things that can be treated and are not Celiac). You doctor should be *supporting you* if you feel better, even if you don't have Celiac.

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I am glad to hear you have found a doctor you like.....that is just so important. I did want to add one note though, regarding the use of Armour thyroid. Although a good hormone substitute, it is not always better to switch from a synthetic to Armour. I used Armour for a couple of years but, as I have autoimmune thyroid disease from Celiac, it was not working for me after a few years. It also did little to kick down the autoimmune antibody numbers I was coming back with on my blood work.

I switched to Levoxyl and was able to bring my thyroid under better control. It is harder to maintain a thyroid that is autoimmune challenged.

Armour is a good choice for some but it does not always work better just because it's derived from a natural source. I'm sure there are those with success stories but it is not guaranteed.

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During this, it was found that I have a abnormality (blockage) in my nose that will need surgery to correct.

Here's your chance to have a nose job and have it paid for. ;)

Just and FYI, goats milk has casein. Maybe you could do the other milks (almond, rice, soy) and just limit AND rotate them so you have a treat of cereal once a week or so with a different milk each week.

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Congratulations :rolleyes: !!! I am truly very happy for you. And when you find a good doctor, you should support him anyway you can. There are enough brain dead doctors out there, so it's good to hear, that the good ones are out there, too.

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Guest Doll
I am glad to hear you have found a doctor you like.....that is just so important. I did want to add one note though, regarding the use of Armour thyroid. Although a good hormone substitute, it is not always better to switch from a synthetic to Armour. I used Armour for a couple of years but, as I have autoimmune thyroid disease from Celiac, it was not working for me after a few years. It also did little to kick down the autoimmune antibody numbers I was coming back with on my blood work.

I switched to Levoxyl and was able to bring my thyroid under better control. It is harder to maintain a thyroid that is autoimmune challenged.

Armour is a good choice for some but it does not always work better just because it's derived from a natural source. I'm sure there are those with success stories but it is not guaranteed.

Thanks for the heads up! The main reason I wanted to try it was because it has naturally occuring T3 as well as T4. I have heard good stories and bad stories from people who have taken it, so all I can do is try it and see! I have tried Cytomel in the past (synthetic T3), but since I had undiagnosed Celiac at the time, I stopped it due to my heart palpitations (actually they were from gluten, but I didn't know it at the time). I was too busy dealing with Celiac and put how crappy I felt from Hashi's on the back burner. I've felt like crap for a good 10 years! I still still do! And I'm fairly young! :(

I still produce some of my own thyroid hormone after 15 years, which is rare, especially in someone diagnosed so young (I was 10). My levels go up and down like a wave, and let's just say it's not fun. :angry:

So I'm giving it a shot, but you may be right, I may have to go back on Synthroid. Sometimes the doctor can make a mistake dosing though. If the doctor doesn't match up the doses right when switching over and you have too low of a dose, that can cause an increase in antibodies. Higher doses surpress your own natural thyroid function, which lowers antibodies. Also, pig thyroid hromone can cause your body to make antibodies against it, since it is a non-human DNA source. I have also heard that pig thyroid is hard to standardize the doses. I *do* think there are less fillers, which may be a good thing.

I don't know what to expect, but anything to stop the rollercoaster would be nice! When you've tried it all like me, it's worth a shot! :D

Did you feel *any* better on the Armour? How do you feel on Levoxyl?

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Guest Doll
Here's your chance to have a nose job and have it paid for. ;)

Just and FYI, goats milk has casein. Maybe you could do the other milks (almond, rice, soy) and just limit AND rotate them so you have a treat of cereal once a week or so with a different milk each week.

Lol!! Whose bum :blink: (in the pic) is that!? OMG, I fell off my chair. :lol:

Yes, I considered the nose job aspect ;) but I like my nose! The world has enough Pamela Anderson's....boring. But then again...it is FREE...hmmmm....;)

Is it possible to be allergic to just cow's milk? I guess that would be more of an intolerance, right?

Either way, thanks for the rotating advice. I will have to do that. I love my cereal and I don't want to totally give it up! :) Cereal and fuit juice is another idea perhaps? :blink: Ewww.....but hey, whatever works!

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Guest Doll
Congratulations :rolleyes: !!! I am truly very happy for you. And when you find a good doctor, you should support him anyway you can. There are enough brain dead doctors out there, so it's good to hear, that the good ones are out there, too.

Yay! Thanks! You guys on here would love him! He is ALL about the leaky gut etc. :D Now, like I said, we just need to find a cloning machine....

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