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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.