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Finally Diagnosised With Celiac's

cahill

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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:

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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.

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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!!!

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    • knitty kitty
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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