Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

San Francisco Area Doctor And Talking About Celiacs
0

3 posts in this topic

Hi Friends!

 

I have been gluten free for 2+ years but don't have a formal diagnosis because every time I go to the doctor, they want to test for everything else, or imply that maybe this is all in my head and I am so frustrated I could burst.

 

When I eat gluten, I get all the symptoms up to and especially nausea, joint pain, anxiety, muscle weakness, headaches, and brain fog. I've been to a gastroenterologist, and allergist, and my GP, and they all sort of throw up their hands and say they don't know what is causing it. Yes, I have had skin tests for all sorts of allergies, nothing came up. No, I have not had blood tests or biopsies. Symptoms were pretty well controlled on gluten-free diet, but now I seem to be reacting to corn as well and since it is getting worse, I need to see someone. I live in San Francisco. Any suggestions?

 

Thanks!

0

Share this post


Link to post
Share on other sites


Welcome

 

They may be throwing up their hands because they can't test you for Celiac if you have been gluten-free for 2 years?  At this point, you have to decide if you really want to go back to eating gluten to be tested.  If you are happy eating gluten-free and feel certain that gluten is an issue.....maybe you don't need to find a doctor to test you for Celiac Disease?

0

Share this post


Link to post
Share on other sites

Hi! Thanks for res

 

Welcome

 

They may be throwing up their hands because they can't test you for Celiac if you have been gluten-free for 2 years?  At this point, you have to decide if you really want to go back to eating gluten to be tested.  If you are happy eating gluten-free and feel certain that gluten is an issue.....maybe you don't need to find a doctor to test you for Celiac Disease?

 

Thanks for responding! I know that my testing options may be limited given that I will not, under any circumstances reintegrate gluten into my life. The consequences are far too painful. But my need for a doctor - and I am sorry that this was not clear - has more to do with the fact that I am still experiencing some symptoms. My gut it as my joints still get majorly inflamed. I don't know if maybe I am eating something contaminated or if I've developed a new allergy. There are so many unanswered questions that start with, but by no means end with the celiacs.

 

What I am really looking for is a doctor who understands celiacs  and who is able to help diagnose and treat the remaining symptoms.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,669
    • Total Posts
      914,333
  • Topics

  • Posts

    • Gluten free backing food
      I just went back & checked the ingredients in those gluten-free MRE's. It says modified food starch & doesn't specify from what so if I were you I would certainly check with the company & have them clarify that to your satisfaction.
    • Blood sugar, hunger, celiac
      So I have celiac disease and also Hashimoto's thyroiditis (but not on meds because it's apparently "not bad enough" yet...). When I was still on gluten, I had chronically high cortisol and also high blood sugar and insulin. And when these were high (cortisol, blood sugar, insulin) I had constant hunger. Like I was starving all the time, and eating didnt help and often actually made me hungrier. It was a pretty horrible time, and no one even thought to test my blood sugar for a long time because I was young (21/22), thin (bmi 19), and have ZERO family history of diabetes. When I got off the gluten, cortisol came down over time, blood sugar improved some but still not ideal. (Getting glutened raises these again) For further blood sugar support, I took chromium and cinnamon and cut down on carbs (I'm not super low carb though). A few months ago I started taking berberine and that's helped a lot. My recent blood tests showed that my fasting blood sugar was 4.7 and my A1c was 5.6. My doctor was pleased. However, what I don't get is that I still have hunger issues at times. I mean, it has improved a ton since the worst times. I do have meals where I feel satisfied. But other times I feel like I haven't eaten very much at all after a meal. I thought when I got my blood sugar into the normal range I wouldn't have to think about this anymore, i would just eat, feel satisfied, not start feeling hungry until at least a few hours later, etc.It doesn't even seem to correlate to whether the meal is higher carb or not.
    • Gluten free backing food
      This is not going to be easy for you. You're going to have to change the foods in the pack out from time to time rather than just packing it & leaving it for years. I'm thinking weight is a factor too. I have a few suggestions..... http://www.walmart.com/ip/13398018?wmlspartner=wlpa&adid=22222222227010019313&wl0=&wl1=g&wl2=c&wl3=40886859272&wl4=&wl5=pla&wl6=78817797152&veh=sem      Tuna in pouches. Powdered milk https://jet.com/product/detail/cbb5f52fcf294bd3b66d8a77b268c584?jcmp=pla:ggl:loser_jd_food_beverages_tobacco_a3:food_items_cooking_baking_ingredients_canned_dry_milk_a3_other:na:na:na:na:na:2&code=PLA15&k_clickid=00396dda-02b2-63e9-5200-000028bca9be&abkId=403-1014808&gclid=CjwKEAiArdG1BRCLvs_q-IObwxMSJACXbLtzFTLkAO24ayN9WARBR06XXmQZEMdF8eZC4EZoCsSgfBoC8Gzw_wcB Nuts & dried fruits Instant oatmeal https://jet.com/product/detail/34cb04f4695e4978899c8b60b7b1aed8?jcmp=pla:ggl:jd_food_beverages_tobacco_a3:food_items_grains,_rice_cereal_oats,_grits_hot_cereal_a3_other:na:na:na:na:na:2&code=PLA15&k_clickid=00396dda-02b2-63e9-5200-000028bca9be&abkId=403-171581&gclid=CjwKEAiArdG1BRCLvs_q-IObwxMSJACXbLtzyw9QEXipSuCld5x1nxjMxV9PL-PM3ISAGik8XU2LphoCRuLw_wcB
        I did find a company that does gluten free MRE's: http://www.preparewise.com/food-storage/gluten-free-food-storage.html
    • What does this all mean?
      It's terrible that you are left hanging like this! I'm so sorry. Can you get to the doctors office & get a copy of the of the test results? If you can, then you could post them here & we have people who can interpret them for you.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,681
    • Most Online
      1,763

    Newest Member
    WillWeaverRVA
    Joined