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

Finally Diagnosised With Celiac's

cahill

Recommended Posts

cahill Collaborator
cahill
Posted

This past week has been an extremely emotional one.

After 40 + years of dealing with doctors, trying to find out what is wrong with me FINALLY some answers.

Maybe because my physical symptoms have gotten so bad that they cant ignore them, or maybe doctor are finally understanding more about auto-immune disease, what ever the reason,,,I finally have ANSWERS

I have in the past 40+ years dealt with soooooo many different doctors, most of them just wanted to throw pills at me,some unnecessary medical procedures ,misdiagnoses or diagnosing simple NON-Diagnosis like IBS,,(IBS is a symptom not a diagnoses IMO ) most of them thinking I was crazy. A couple of them actually said I was crazy.

Over the past year I have started getting copies of my blood work, CT scans,ER reports ect... EVERYTHING!! Then I INSISTED that my primary care doctor refer me to an allergist, an endocrinologist and a GI doc.

The allergist was not a very good doc and his office was very poorly run. The whole experience was not good. After blood testing I was called and told the all the results were negative. BUT after I insisted on receiving copies of the reports and reading them the reports stated I was in fact highly allergic to Eggs and Almonds.

The endocrinologist was a positive experience from the start.

She took the time to talk to me and ACTUALLY heard what I was saying. After the blood work was done, I was called and told I tested positive for Hashimotos .I havent gotten copies of my blood work yet,, she tested for a whole lot of things,, but I will get them during my follow up appointment but they did fax the reports to my new GI doc.

The GI doc ,

I made sure I had copies of everything either with me or faxed to her, every CT scan report,every ultrasound report,blood tests, post op reports, everything I could get copies of I did,,, the poor woman had a 4 inch thick chart on me before she even saw me :lol:

The first thing she said to me after introducing her self was that she did have a chance to look over my file :D , she ACTUALLY read the reports :D

She spent over an hour with me,, an hour that will make a difference in the lives of my children and grandchildren .

Based on my medical history,symptoms, testing, dietary response and physical exam she diagnosed me with gilbert-meulengracht syndrome and Celiac's

As I was getting ready to leave I told her that she had given me more answers in that one hour than I had been able to get in the past 40 years.She said that was because she had the benefit of having all the information in front of her.

MY emotions are all over the place,grief,sadness,anger,relief ect...I cant stop crying ..

I am grateful that my children and grandchildren now have the benefit of my diagnosis.

I am grateful to all of you and this forum. The knowledge and support I have received in these forums is PRICELESS!! With out the knowledge and information shared in these forums I would not have known the questions to ask or what direction to go . You have helped me give my children and grandchildren the greatest gift possible,KNOWLEDGE .

Thank you all :wub:

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you finally found a good doctor. Now you can heal and encourage the rest of your family to be tested. I hope things improve for you very soon.

keithceliac2010 Rookie
keithceliac2010
Posted

I am happy for you. Your feelings are similar to those which I had 2 months ago. I went 30+ years being misdiagnosed and I don't have much faith in the medical system. In fact, it was my wife, who spent countless hours researching my symptoms online; she was the one who diagnosed my celiac-NOT A DOCTOR!! Yes, I had the same feelings you did as well. Some anger at the medical community but then I decided that I am not going to focus on the negative emotions. Instead, I made a point to focus on the fact that I am getting healthy now and it is still not too late to enjoy the rest of my life and spend more quality time with my loved ones. Try to fight through the negative emotions and focus on the positive outcome that has finally come your way. In the short 2 months that I have been gluten free, all of my physical and mental ailments have completely vanished and I am a whole person for the first time in my life. Best of luck in your journey and your newfound life!!

hnybny91 Rookie
hnybny91
Posted

I was very angry when I figured out what was wrong with me. After reading a site on celiac disease I had practically every symptom and was very angry that not one doctor I had seen over the last four years had put the pieces together. I went gluten free on my own and was feeling like a normal person again after only one week. It took me months not to feel angry every day over it. Congrats on finally having a diagnosis and welcome to the boards :)

Roda Rising Star
Roda
Posted

Oh C, I'm so glad you got some answers!! I've been thinking a lot about you lately. Hopefully your extended family will take this information seriously and seek testing. I know some of your siblings would probably benefit. As for your children/grandchildren this is good to know also. Is the gilbert-meulengracht syndrome hereditary? For anyone that is curious, a1956chill and I are from the same very very small hometown and found out about it after I answered one of her topics! Pretty cool to meet on here and I'm lucky because I feel we are connecting as friends. :)

cahill Collaborator
cahill
Posted
  • Author

Thanks everyone,, my emotions are still all over the place.

Oh C, I'm so glad you got some answers!! I've been thinking a lot about you lately. Hopefully your extended family will take this information seriously and seek testing. I know some of your siblings would probably benefit. As for your children/grandchildren this is good to know also. Is the gilbert-meulengracht syndrome hereditary? For anyone that is curious, a1956chill and I are from the same very very small hometown and found out about it after I answered one of her topics! Pretty cool to meet on here and I'm lucky because I feel we are connecting as friends. :)

yes R it is hereditary ,, but I dont have much hope the my extended family will take any of this seriously , I know you understand how that saddens me . I will try my best to get them to be tested .

Roda Rising Star
Roda
Posted

Thanks everyone,, my emotions are still all over the place.

yes R it is hereditary ,, but I dont have much hope the my extended family will take any of this seriously , I know you understand how that saddens me . I will try my best to get them to be tested .

Yes I do understand. As the old cliche says "you can lead a horse to water, but you can't make them drink." I'm done telling my brother even though it bothers me. I know he has it too.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

That is so good to hear that you finally have answers. I so hope you will feel good now and continue to heal. My heart breaks every time I read one of these "I was sick for 30 or 40 years"...because I was too. But it is so good to know that you are going to be OK. Here's to your pereseverance!!!

Archived

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

Go to topic listing

  • 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. Me,Sue
      - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed...
    2. Francis M
      - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    3. Scott Adams
      - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,854
    • Most Online (within 30 mins)
      7,748
    TDeb
    Newest Member
    TDeb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.