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Gluten Sensitivity / Celiac Disease and Depression

S.T.E.M. George
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S.T.E.M. George Newbie
S.T.E.M. George
Posted

Hello everyone,

Well, it's great to FINALLY have a name/diagnosis attached to my massive weight loss and moderate/severe depression. In early 2020, I quit drinking and decided to lose weight in response to the pandemic. Intermittent fasting worked really well, and exercise/running brought back my wind; however, this is when the massive weight loss began. As friends and family members began to worry, I stopped running but continued to lose weight. Doctors all but dismissed my complaints due to having " normal " bloodwork. However, the depression/anxiety was horrible, and going from 205 lbs to below 150 lbs in less than a year wasn't imaginary, either. Finally, an emergency room NP referred me to a gastrointerologist. Within 5 minutes, he said that I may have celiac disease. To my surprise, my tests came back positive for elevated ( whatever it is...Ig something, I think ). Anyway, I'm slowly gaining weight, but depression and anxiety are still issues ( and have been for many, many years ). My question is as follows: Are there support groups that are active outside of the internet? The pandemic is passing ( hopefully ), and some meet-and-greet events would be wonderful. Do any of you live in Upstate South Carolina?

Cheers, and best wishes to all of you. We got this!

S.T.E.M.-G

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trents Grand Master
trents
Posted

Yes, there often are celiac support groups available but whether or not there is one close to you is another question. On the other hand, if there is not one close to you maybe you should consider starting one.

GFinDC Veteran
GFinDC
Posted

Hi George,

Maybe a search on celiac group in your state will turn something up.

Your GI should have done a test for vitamin / mineral deficiencies?  Depression/anxiety are linked to celiac and can be symptoms of deficiencies.  Poor absorption of vitamins and minerals leads to many symptoms for people with celiac disease.  B vitamins, D and some minerals like copper, zinc, magnesium, boron, may be low.

https://duckduckgo.com/?q=celiac+group+south+carolina&t=brave&ia=web

Scott Adams Grand Master
Scott Adams
Posted

This list is pretty old, but it may be helpful, please let me know if any of the listings need to be udpated:

 

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      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which...
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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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