Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


Guest Doll

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

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

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.

Gemini Experienced

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.

Jestgar Rising Star
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.

stef-the-kicking-cuty Enthusiast

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.

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

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....

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.