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Anger?

Lori HC

By Lori HC
in Coping with Celiac Disease

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Lori HC Newbie
Lori HC
Posted

Hello everyone,

I am new to join this forum, though I have been look at your posts since I was diagnosed in September (it's now end of October). Just wanted to introduce myself. 

My name is Lori. I'm 43, female,  and have had stomach issues for my whole life. As a child, I was ALWAYS tired. My doctor couldn't figure out what was wrong with me and just told my mom to get me into sports to help tire me out at night. I missed a lot of school because I was sick quite a bit, but got good grades so no one seemed to be bothered by it. Over the past 2 years my symptoms were consistently getting worse. Just before I had my gallbladder removed (gall bladder attacks that were getting longer), I started vomiting on a regular basis. Didn't seem to matter if I had an empty or full stomach or if I felt okay. I would be vomiting at least 2 times a week and chewing on ginger tablets constantly. Diarrhea also got worse but I didn't think much of it because I had been diagnosed with IBS when I was 20 and the celiac biopsies came back negative. I was taking 2 to 4 Immodium gel pills every day just to get through work. My doctor did numerous tests to find out why I was so sick all the time but no positive results for anything. She decided to send me for another gastroscopy and colonoscopy since it had been over 20 years since my last one. There, the doctor found out that I have a sliding hiatus hernia, ulcers, and bile reflux. He also did some biopsies which came back "blunted villi" so he recommended that my doctor send me for celiac blood tests. Sure enough, they both came back positive. This after a psychiatrist told me I should be tested again - years ago when the depression medication didn't work and my inflammation levels were through the roof.

Today I also found out I have osteopenia. I thought I had worked through the anger that I hadn't been diagnosed years ago (when it wasn't too late to prevent a lot of the issues I have now), but it has raised it's ugly head again. 

My question to all of you is, how did you get past the anger at all the missed/wrong diagnoses over the years? I would have gone back and insisted on the doctor doing something if I hadn't assumed I had IBS for over 20 years. Maybe I could have had children. Maybe I could have prevented the bone loss and hair loss. 

Also, did anyone find that their hair grew back? How long did it take?

Happy to have found all of you!

Lori

Here are my symptoms/related illnesses:

  • Depression (diagnosed at 19 with intermittent success with medication combinations)
  • Chronic inflammation
  • Joint pain
  • Skin rashes
  • Chronic fatigue
  • B12 and Iron deficiency anemia for years - I have had to take strong supplements for over 20 years.
  • Hair loss
  • PCOS (but I still ovulate so I'm wondering if this is true)
  • Insulin resistant/pre-diabetic
  • Very overweight beginning in 20s with difficulty losing weight for years (except the time I eliminated ALL grains)
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Ennis-TX Grand Master
Ennis-TX
Posted

Welcome to the forums, glad you finally figured it out. I can relate on the anger and weight issues. In high school college I was huge, and had very little energy. That came off mostly before going 100% gluten free and when I  thought I was going to die right before diagnosis.
Anger wise I refereed to it as Mr. Hyde, diet and supplements kept it under control to some degree, but removal of gluten and my other 2 triggers got rid of him. I found the artificial sweeteners Asputame, and Asuflame  triggered him also. I found grain free diet, with plenty of happy foods like pumpkin seeds and cocoa nibs worked wonders with who I feel.

Jmg Mentor
Jmg
Posted

Hi Lori and welcome :)

1 hour ago, Lori HC said:

My question to all of you is, how did you get past the anger at all the missed/wrong diagnoses over the years?

Yikes, this is the hardest question to answer. I think there's stuff you can do by yourself, but I found seeing a counsellor very helpful. One thing I did was write the world's longest rambling rant which you're welcome to try to get through. :P

  • 1 month later...
celiacsojourness Rookie
celiacsojourness
Posted

It's been years since my celiac diagnoses and I still get the occasional surge of anger, though more for the fact that celiac is continuing to be misdiagnosed in others than for my own personal experience (I had to badger for a celiac test when they were trying to test for stomach cancer instead - I was terrified!). It helps me a lot to write posts on this forum to help others find their own diagnoses and offer help when I can. I still have trouble trusting doctors, however :mellow:

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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