mental health

[adhdgi]

i don’t know who may relate but i often feel like people, even professionals, blame every single health issue i have on celiac even when it’s completely unrelated.

i’ve been struggling with depression since i can remember and eating disorders for the past few years and personally, gluten or not, i noticed no difference yet everyone seems to believe gluten has something to do with it like i can’t suffer from depression anyway, i’ve been rejected by an ed residential centre despite being visibly ill because “it’s normal for people with celiac to lose weigh”, i’ve even been invalidated while i was in tears ranting about feeling suicidal.

also i have ADHD and i seriously heard people claiming it’s an extra intestinal symptom of celiac and it’s important to be careful or i’ll never have a normal life and i’ll forever be a failure.

i know that’s not how it works but it hurt, i love my ADHD after all, i love how my brain works and how i’m creative and energetic, i wouldn’t change it if i had the chance but people around me still use it as a way to make me feel like i’m not good enough at avoiding gluten.

like are my struggles not valid, is my experience not real?

i know neurological symptoms exist in celiac but it shouldn’t be an excuse to neglect my mental health

[trents]

6 minutes ago, adhdgi said:

i don’t know who may relate but i often feel like people, even professionals, blame every single health issue i have on celiac even when it’s completely unrelated.

i’ve been struggling with depression since i can remember and eating disorders for the past few years and personally, gluten or not, i noticed no difference yet everyone seems to believe gluten has something to do with it like i can’t suffer from depression anyway, i’ve been rejected by an ed residential centre despite being visibly ill because “it’s normal for people with celiac to lose weigh”, i’ve even been invalidated while i was in tears ranting about feeling suicidal.

also i have ADHD and i seriously heard people claiming it’s an extra intestinal symptom of celiac and it’s important to be careful or i’ll never have a normal life and i’ll forever be a failure.

i know that’s not how it works but it hurt, i love my ADHD after all, i love how my brain works and how i’m creative and energetic, i wouldn’t change it if i had the chance but people around me still use it as a way to make me feel like i’m not good enough at avoiding gluten.

like are my struggles not valid, is my experience not real?

i know neurological symptoms exist in celiac but it shouldn’t be an excuse to neglect my mental health

Hm. How can we help you or did you just want to vent? By the way, we all need to vent at times so that is perfectly okay. But do you have a question for us? Usually, we see the opposite with celiacs in that they themselves try to connect all their medical problems to celiac disease while the medical professionals are looking everywhere but that.

Edited August 20, 2022 by trents

[Jays911]

11 minutes ago, adhdgi said:

i don’t know who may relate but i often feel like people, even professionals, blame every single health issue i have on celiac even when it’s completely unrelated.

i’ve been struggling with depression since i can remember and eating disorders for the past few years and personally, gluten or not, i noticed no difference yet everyone seems to believe gluten has something to do with it like i can’t suffer from depression anyway, i’ve been rejected by an ed residential centre despite being visibly ill because “it’s normal for people with celiac to lose weigh”, i’ve even been invalidated while i was in tears ranting about feeling suicidal.

also i have ADHD and i seriously heard people claiming it’s an extra intestinal symptom of celiac and it’s important to be careful or i’ll never have a normal life and i’ll forever be a failure.

i know that’s not how it works but it hurt, i love my ADHD after all, i love how my brain works and how i’m creative and energetic, i wouldn’t change it if i had the chance but people around me still use it as a way to make me feel like i’m not good enough at avoiding gluten.

like are my struggles not valid, is my experience not real?

i know neurological symptoms exist in celiac but it shouldn’t be an excuse to neglect my mental health

Try meditation and prayer. Blessings. 

[trents]

adhdgi, are you consistently practicing a gluten free diet and if so, how long have you been doing so? It can take two years or longer for the small bowel villi to return to normal, even on a strict gluten free diet.

Also, what vitamin and mineral supplements are you using? Many mental health struggles can be traced to deficiencies in nutrient absorption or an inadequate diet, and good vitamin and mineral supplementation can help a lot.

[Sherma]

I believe I understand you all, to well. I have been depressed as far back as I can remember, and I am 76! I have only been diagnosed 'with possibly' non-celiac, 7 years!  I do also have Parkinson's Disease which I didn't know - has a dementia attached to it sometimes.  I too, find no relief on gluten free diet, mentally. The fibromyalgia is 90% better, the rest is probably old age. It helps greatly otherwise. You don't say your age but I'd guess you at least 40 years younger than me. I am not a medicine-taker until I can't bear it. So vitamin and supplements etc have been my mainstay for 50 years except for the few months spaced out when I had to get a 'nerve pill' to get me over a hump. 

You are so right, your neurological issues should not keep them from helping you with the mental issues. I went to a new gp in March for help and he took me serious. But he required 3 different meds that he was sure, would help. I cannot take any SSRI's. But these 3 all worsened me in everyway. He finally gave me the 'nerve pill' that I have taken off and on for 50 years but a lower dose because of my age and it can cause elderly to fall and break bones. He gave me 2mg when I had always gotten 5 mg. Last time I had any was 12 years ago!

 I also agree with Jays911: prayer helps.

Be assured, there are others out here who sympathize with you.

[Jays911]

14 hours ago, Sherma said:

I believe I understand you all, to well. I have been depressed as far back as I can remember, and I am 76! I have only been diagnosed 'with possibly' non-celiac, 7 years!  I do also have Parkinson's Disease which I didn't know - has a dementia attached to it sometimes.  I too, find no relief on gluten free diet, mentally. The fibromyalgia is 90% better, the rest is probably old age. It helps greatly otherwise. You don't say your age but I'd guess you at least 40 years younger than me. I am not a medicine-taker until I can't bear it. So vitamin and supplements etc have been my mainstay for 50 years except for the few months spaced out when I had to get a 'nerve pill' to get me over a hump. 

You are so right, your neurological issues should not keep them from helping you with the mental issues. I went to a new gp in March for help and he took me serious. But he required 3 different meds that he was sure, would help. I cannot take any SSRI's. But these 3 all worsened me in everyway. He finally gave me the 'nerve pill' that I have taken off and on for 50 years but a lower dose because of my age and it can cause elderly to fall and break bones. He gave me 2mg when I had always gotten 5 mg. Last time I had any was 12 years ago!

 I also agree with Jays911: prayer helps.

Be assured, there are others out here who sympathize with you.

[Jays911]

Bless you. I struggled with depression for decades before being diagnosed with celiac. I still struggle at times, but it is so much better. I hope you find a way forward. Sharing our difficulties and tips and helps. Again, blessings. 

[Kate333]

Adhdgi, I hope it helps to realize you are not alone in your suffering.  So many others have struggled with lifelong or more recent depression and/or anxiety, sometimes related to celiac disease, often not.  And those issues have understandably been magnified by this awful pandemic.

If you do have a celiac disease diagnosis, ask your GP or GI doc to order an updated TTG/IgA blood test to assess your current level of G exposure.  If your blood test numbers are abnormally high, your body is still being inflamed by G and that could certainly explain part of your ongoing struggle with MH issues.   If your blood test is normal, then you can be assured that G is likely not a big factor in your symptoms.  If the GP or GI doc will not order an updated blood test, you can get them in a home blood test kit form for about $100 in the USA.

Regardless of the causes (G-related or not) of your ongoing MH issues, you are right that your MH issues DESERVE attention and treatment. esp. if you are feeling so bad that you are feeling SI, but you will only get that kind of help from a MH specialist, not a GP or GI doc.  I urge you to ask your GP or GI doc (or hospital ER doc, if necessary) for an immediate referral to a MH specialist for evaluation and perhaps short-term counseling and/or a low-dose anti-anxiety/anti-depressant medication.   Also, you might want to check out the website: anxietycentre.com.  It clearly explains in great detail the strong mind-body connection and how chronic, severe depression/anxiety often shows up in physical body symptom forms, like chronic indigestion, fatigue, body aches/pains.  That has certainly been the case for me.   

I hope you get the help you need and feel better soon.  

Also, Sherma, would you mind sharing the name of the "nerve pill" you took?  It sounds like perhaps an anti-anxiety medication? Also, did it help your fibromyalgia?