Dealing with the Hopelessness

[Astrobug]

Does anyone else have a hard time coping with the mental aspect of celiac disease? I've been gluten free for about 3 years now, after a diagnosis in the navy; and it doesn't seem to get easier. I go through cycles where I think I have a grasp on my condition, and then for some reason my symptoms start acting up again making me rethink my whole process. It causes me to fall into this pit of hopelessness, just wishing I didn't have to deal with this anymore. This disease is exhausting. It's not even the fact that I want to eat bread (I've lost those cravings). I just don't want the consequence of shitting my brains out every time something is slightly contaminated or I accidentally mess up, despite my best research efforts. 

 

Long time celiac veterans, does it get any better?

[trents]

Welcome to the forum, Astrobug.

We all do, but in different ways. The hardest part of celiac disease for many of us is the limitations it puts on our social lives. For some, it's downright isolating. 

But let me ask you, do you still eat out at restaurants?

[Scott Adams]

Welcome to the forum. 

I'm sorry to hear you're still having issues dealing with the gluten-free diet. 

Jean Duane PhD has published 5 chapters of her book on the social aspects of celiac disease here on Celiac.com. Below is chapter 5, but you can navigate to the other chapters by the links in and below the article. I think she's done an excellent job of presenting many of the various scenarios that you may be dealing with now, and she also offers different ideas for how to deal with them:

 

[Astrobug]

38 minutes ago, trents said:

Welcome to the forum, Astrobug.

We all do, but in different ways. The hardest part of celiac disease for many of us is the limitations it puts on our social lives. For some, it's downright isolating. 

But let me ask you, do you still eat out at restaurants?

I do sometimes; I really try not to and when I do I put a lot of research into making sure they have options for me. I can't tell if it's a placebo effect telling me that my food has been contaminated or if the restaurant really has cross-contaminated the food though because I often feel ill afterwards regardless. As of late, I've honestly thought of cutting it out altogether, except special occasions. At the same time though, it can be tiring and a bit monotonous cooking food at home every single day.

It's really hard sometimes for me to determine where my symptoms are coming from: exposure to gluten, placebo effect where i think I've been exposed; or something else in my body entirely. And without proper health insurance/funds to see a gi doctor or nutritionist, I've had to try and figure this all out on my own.

33 minutes ago, Scott Adams said:

Welcome to the forum. 

I'm sorry to hear you're still having issues dealing with the gluten-free diet. 

Jean Duane PhD has published 5 chapters of her book on the social aspects of celiac disease here on Celiac.com. Below is chapter 5, but you can navigate to the other chapters by the links in and below the article. I think she's done an excellent job of presenting many of the various scenarios that you may be dealing with now, and she also offers different ideas for how to deal with them:

 

Thank you Scott, I'll be sure to give this a read!

[Wheatwacked]

1 hour ago, Astrobug said:

I go through cycles where I think I have a grasp on my condition, and then for some reason my symptoms start acting up again  It causes me to fall into this pit of hopelessness

 

Vitamin D and Depression: Where is all the Sunshine? "Gloth, Alam, and Hollis (1999) randomized 15 participants with SAD to either 100,000 IU of vitamin D (one time dose) (n = 8  or phototherapy (n = 7). They reported that depression (assessed with the Hamilton Depression Scale) decreased in persons who received vitamin D (from 10.9 to 6.2, p = .040) as compared to those who received phototherapy (from 12.6 to 11.3, p = ns). There were no untoward side effects from the dose of vitamin D; however, a limitation of the study was the one time dose."

Raising your vitamin D3 to 10,000 IU a day will quell your mood swings in about a week. Higher levels of D greater than 70 ng/ml may dampen the autoimmune response. It takes about 2000 IU a day to raise your D3 blood plasma by 1 ng/ml. Most Celiac patients have low or deficient D < 29 ng/ml. Even at 10,000 a day it took 7 years to raise mine to 80 where it is now holding steady. The effects on my long term depression was in less than a week but the autoimmune stabilizing effect happened somewhere between 47 ng/ml and 80. Safety: the one that convinced me was a trial done on kidney transplant patients. Some recieved a one time shot of 1,250,000 IU while others had various doses orally. At the end of a year there was no negative effect on anyone.

[trents]

2 hours ago, Astrobug said:

I do sometimes; I really try not to and when I do I put a lot of research into making sure they have options for me. I can't tell if it's a placebo effect telling me that my food has been contaminated or if the restaurant really has cross-contaminated the food though because I often feel ill afterwards regardless. As of late, I've honestly thought of cutting it out altogether, except special occasions. At the same time though, it can be tiring and a bit monotonous cooking food at home every single day.

It's really hard sometimes for me to determine where my symptoms are coming from: exposure to gluten, placebo effect where i think I've been exposed; or something else in my body entirely. And without proper health insurance/funds to see a gi doctor or nutritionist, I've had to try and figure this all out on my own.

Thank you Scott, I'll be sure to give this a read!

Have you considered you may be intolerant to other, non-gluten containing foods such as dairy, oats or eggs? Recently, there was research shared in this forum about how certain spices contain proteins that mimic the effect of gluten in some celiacs.

[LCAnacortes]

I am so sorry to hear of your problems - but know that you are not alone.  If I mess up - I am in the bathroom for hours. I can definitely relate to how you phrased things.  Things got complicated for me - living with a person that is not gluten free.  Something that might start out as gluten free - ends up getting contaminated.  I'm still figuring out all of this and I am contemplating trying to educate some of the smaller restaurants in my area so I can go out to eat once in a while. Take care! 

[Kate333]

Hi Astrobug.  Believe me, I so feel your pain!  I was diagnosed in late 2019, then began a STRICT gluten-free diet in March 2020.  Then along comes the pandemic/shutdown.  This celiac disease diagnosis + Covid pandemic timing has only magnified my anxiety/depression levels because they made me fear not only possible gluten exposure but also Covid exposure.  And it doesn't help that BOTH Celiac AND Covid are chronic, incurable health challenges which require CONSTANT surveillance of almost every tiny aspect of life to prevent exposure and worsened illness.  So I can honestly say I have been an emotional wreck since then.

Get an updated TTG/IgA blood test to assess your current gluten antibody levels.  If not insured, you can buy a home test kit for $100.  If the result is still abnormal 3 years after diagnosis, then you know your body has not fully healed yet, so you need to make changes in your eating habits.  

Avoid eating out for the next few months and see how you feel.   MOST restaurants are far too risky, esp. those claiming gluten-free menus which create a false sense of security, and the pain from potential, even minute gluten exposure is just not worth the continued suffering/gut damage.

Most importantly, contact your VA or a local hospital, or county social services for at least short-term counseling and low-dose anti-depressant meds to help you through this current emotional turmoil.   

Also, look into low-cost health insurance coverage.  You should easily be able to enroll for low-cost health insurance through the affordable care act national exchange or Covered California (if you live in CA) or perhaps through your employer.   Also, the military used to provide good health insurance for veterans, including free care at a VA medical center in your city/state.  

Good luck, and I hope you feel better soon.

[VictoriaSmith]

I've now been gluten free for a month. Very new and inexperienced to the diet and all the ways I can be cross contaminated.

My doctor refused to test me when I brought my concerns up since there's no other logical explanation for all my symptoms, and wanted me to try gluten-free for a week. Like a week would do anything... Referred to it as an allergy, brought on just by bread. If our doctors were more knowledgeable and supportive, there'd be less anxiety I believe. 

We halfway expect our family members to have their doubts or lack of knowledge. At least I do, though my husband has been wonderful so far in helping me navigate through what I can eat and understanding I can no longer eat out at restaurants. It's too much of a risk.

His family gatherings always feature big dinners. We get together for Easter, Memorial Day, Mothers/Father's Day, Thanksgiving, Christmas.

Mothers and Father's day dinners were hell to sit through this year. I ate before, but having to explain why I wasn't eating I already felt annoying, difficult and disrespectful. Everything I loved to eat, I now can't have. 

I don't have any answers on how it gets easier. I'm stumbling through all the same feelings your having. Only thing I keep telling myself is nothing is worth the symptoms I get from eating gluten. Especially the D, ataxia and peripheral neuropathy. 

I sincerely hope things get better for you. 

 

[VictoriaSmith]

On 6/13/2022 at 5:28 PM, Scott Adams said:

Welcome to the forum. 

I'm sorry to hear you're still having issues dealing with the gluten-free diet. 

Jean Duane PhD has published 5 chapters of her book on the social aspects of celiac disease here on Celiac.com. Below is chapter 5, but you can navigate to the other chapters by the links in and below the article. I think she's done an excellent job of presenting many of the various scenarios that you may be dealing with now, and she also offers different ideas for how to deal with them:

 

Thank you for sharing this. Definitely something I needed to read being new to the diet. Going to let my family members read it as well. 

[Smith, M.E.]

On 6/13/2022 at 5:06 PM, Astrobug said:

Does anyone else have a hard time coping with the mental aspect of celiac disease? I've been gluten free for about 3 years now, after a diagnosis in the navy; and it doesn't seem to get easier. I go through cycles where I think I have a grasp on my condition, and then for some reason my symptoms start acting up again making me rethink my whole process. It causes me to fall into this pit of hopelessness, just wishing I didn't have to deal with this anymore. This disease is exhausting. It's not even the fact that I want to eat bread (I've lost those cravings). I just don't want the consequence of shitting my brains out every time something is slightly contaminated or I accidentally mess up, despite my best research efforts. 

 

Long time celiac veterans, does it get any better?

I’m new, brand new to diagnosed, it’s depressing but we have to hope. I choose to hope🙂

[Awol cast iron stomach]

Sorry to read you are struggling. Many of us have been there. You are not alone. It is frustrating, and isolating. 

It was really difficult to lose long time friends, or no longer be able to eat out. The hardest was when my family of origin refused to come to a gluten-free BBQ I was hosting, if I would not let them bring gluten to it.

You read that correctly. My family chose gluten over me.

 That is when it finally snapped for me, that only people who really cared for me would accept me. Even the gluten-free me. 

(I also have another relative who is a gold standard celiac) . I followed her lead, and just stopped going to events, and hosting of others who did not understand why a gluten-free diet/ environment is medically necessary. Sure I could go and not eat etc., but I realized in the end I had changed. I did not enjoy it. 

I began to take a new persona, embraced my weakness so to speak. I became even more holistic/self care minded than I was previously. I had been more alternative health/wellness oriented 20 years before. These experience firmly planted me more so.

It is more than a diet. It is a lifestyle change. That is what I found as my best coping strategy through this. 

The gluten-free lifestyle is not full of large social groups for many of us, but the ones who accept you for who you are, are really the only ones to allow into your depth of your being & life. 

When the others choose to leave wish them well, and politely hold the "door" for them. For if they are choosing gluten over you, they have bigger problems, then be offended by your inability to consume gluten.

Best wishes.

 

 

[trents]

Good words, Awol!

I would like to add that while it is true that the celiac experience typically involves changes in relationships, it doesn't have to be all or nothing for those among our family/friend base who aren't willing to adjust with you. It may mean you will not be able to participate in food events with them but you can still have them as part of your life in other ways. It's not necessary to take a hard line with them in all areas. We are all in a different place at any given time in life and attitudes can change with time and experience. Leave room for it. Try not to take their ignorance personally.

Edited June 15, 2022 by trents

[Smith, M.E.]

Agree 

[VictoriaSmith]

On 6/13/2022 at 6:01 PM, Astrobug said:

It's really hard sometimes for me to determine where my symptoms are coming from: exposure to gluten, placebo effect where i think I've been exposed; or something else in my body entirely. And without proper health insurance/funds to see a gi doctor or nutritionist, I've had to try and figure this all out on my own.

 

I understand this completely. I don't have medical insurance as well. I have a copayment everytime I go in to see my Dr, but that does add up quick. 

I don't know where your at, but in my state there are a few local free or income based clinics for mental health. Perhaps you could find one in your area? It wouldn't be a bad idea to get in and talk with someone about your fears or feelings of hopelessness. 

One hard thing I learned years ago when I had my gallbladder removed is your mental health and gut health go hand in hand.

Everytime I get too stressed I have the worst time with D and abdominal pain.

It's been a vicious circle with stress causing issues and my issues causing stress with trying to figure out if I am celiac or just NCGS since my doctor refuses to test. 

[Wheatwacked]

2 hours ago, VictoriaSmith said:

trying to figure out if I am celiac or just NCGS since my doctor refuses to test. 

It doesn't matter in the end. Either you stop eating gluten or you get sicker. Some research indicates that NCGS and Celiac are variations of Gluten Sensitivity. I would like to see if there is a difference between them in blood plasma levels of vitamin D. Do people with Celiac Disease diagnosis have lower vitamin D than people diagnosed with NCGS. Or other nutrient deficiencies.

A possible senario: We all avoid sunlight for fear of skin cancer. Vitamin D, which has been shown to modulate the Autoimmune Response, drops to < 29 ng/ml. We get an infection, COVID, SIBO or anything that triggers an immune response which uses up the limited vitamin D reserves, allowing the immune system to run amuck. It takes raising the vitamin D level to above 70 ng/ml to switch off the autoimmune system once the infection is controlled. Not enough D the system off switch doesn't work. But our medical advisors tell us not to worry vitamin D is only for bones and too much is BAD because you might calcify your vascular system and have a heart attack. But, "data are weak regarding the association between vitamin D intake and cardiovascular calcifications. "To the contrary, current evidence suggests that improvement in vitamin D status reduces the risk for hypertension, stroke, and myocardial infarction... Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL" Vitamin D Is Not as Toxic as Was Once Thought

Reguarding friends and family choosing gluten over you: Gluten is additive just like morphine. And just like alcoholics and other drugs they will choose the drug of choice over family and health. Not to mention our western lifestyle, with the help of advertising and government farm incentives promotes wheat consumption.

 

[EvieJean]

On 6/13/2022 at 5:06 PM, Astrobug said:

Does anyone else have a hard time coping with the mental aspect of celiac disease? I've been gluten free for about 3 years now, after a diagnosis in the navy; and it doesn't seem to get easier. I go through cycles where I think I have a grasp on my condition, and then for some reason my symptoms start acting up again making me rethink my whole process. It causes me to fall into this pit of hopelessness, just wishing I didn't have to deal with this anymore. This disease is exhausting. It's not even the fact that I want to eat bread (I've lost those cravings). I just don't want the consequence of shitting my brains out every time something is slightly contaminated or I accidentally mess up, despite my best research efforts. 

 

Long time celiac veterans, does it get any better?

I'm new at it your much more experienced I still am confused on what to eat & what to avoid but already I'm thinking this is a no win situation 

[Smith, M.E.]

There is so much information & being new , some is hard to grasp. Is there a national study being done on Celiac disease?

[VictoriaSmith]

8 hours ago, Wheatwacked said:

It doesn't matter in the end. Either you stop eating gluten or you get sicker. Some research indicates that NCGS and Celiac are variations of Gluten Sensitivity. I would like to see if there is a difference between them in blood plasma levels of vitamin D. Do people with Celiac Disease diagnosis have lower vitamin D than people diagnosed with NCGS. Or other nutrient deficiencies.

A possible senario: We all avoid sunlight for fear of skin cancer. Vitamin D, which has been shown to modulate the Autoimmune Response, drops to < 29 ng/ml. We get an infection, COVID, SIBO or anything that triggers an immune response which uses up the limited vitamin D reserves, allowing the immune system to run amuck. It takes raising the vitamin D level to above 70 ng/ml to switch off the autoimmune system once the infection is controlled. Not enough D the system off switch doesn't work. But our medical advisors tell us not to worry vitamin D is only for bones and too much is BAD because you might calcify your vascular system and have a heart attack. But, "data are weak regarding the association between vitamin D intake and cardiovascular calcifications. "To the contrary, current evidence suggests that improvement in vitamin D status reduces the risk for hypertension, stroke, and myocardial infarction... Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL" Vitamin D Is Not as Toxic as Was Once Thought

Reguarding friends and family choosing gluten over you: Gluten is additive just like morphine. And just like alcoholics and other drugs they will choose the drug of choice over family and health. Not to mention our western lifestyle, with the help of advertising and government farm incentives promotes wheat consumption.

 

That is true. I would say there are defiencies with both celiac disease and NCGS. 

I personally think that the reason why some doctors aren't as knowledgeable or take much stock in vitamin/minerals, it takes away from their jobs. If it's always as easy to take say Vitamin D for depression, or B vitamins for Neruopathy, that would make their jobs easier yes, but would cost them in the long run. Of course I'm inherently distrustful of doctors motives anyways. I've had a few that's made me sicker than I originally came in, or ran a bunch of tests that weren't needed just because my insurance at the time would pay for. 

From everything I've read about Gluten, yeah it is addictive. When starting gluten-free, your body goes through detox, just like from any other posion. I've experienced some odd symptoms since starting my GFD. Mainly extreme hunger. My stomach growls all the time, even after eating. That's much better than the other symptoms I was having though. 

[Wheatwacked]

More fat, less hunger.

[Wheatwacked]

When the doctor is short and fat, and in the picture behind him he was slim; well, it makes me wonder.

[VictoriaSmith]

2 minutes ago, Wheatwacked said:

More fat, less hunger.

Thank you. I've recently added more fish, nuts/seeds and eggs to my diet. I love munching on sunflower seeds as a snack. Tried almond milk for the first time too, I highly doubt I'll go back to cows milk now. It tastes better to me. 

[Wheatwacked]

Before giving up on milk, try 100% Pasture Fed. It tastes like the milk the milkman used to deliver. It's omega 6 to omega 3 ratio is 1:1, the same as fish.

Quote

An Increase in the Omega-6/Omega-3 Fatty Acid Ratio Increases the Risk for Obesity

In the past three decades, total fat and saturated fat intake as a percentage of total calories has continuously decreased in Western diets, while the intake of omega-6 fatty acid increased and the omega-3 fatty acid decreased, resulting in a large increase in the omega-6/omega-3 ratio from 1:1 during evolution to 20:1 today or even higher. This change in the composition of fatty acids parallels a significant increase in the prevalence of overweight and obesity. Experimental studies have suggested that omega-6 and omega-3 fatty acids elicit divergent effects on body fat gain through mechanisms of adipogenesis, browning of adipose tissue, lipid homeostasis, brain-gut-adipose tissue axis, and most importantly systemic inflammation. 

 

[Wheatwacked]

41 minutes ago, Smith, M.E. said:

Is there a national study being done on Celiac disease?

 

 

Edited June 16, 2022 by Wheatwacked

[EvieJean]

2 hours ago, Smith, M.E. said:

There is so much information & being new , some is hard to grasp. Is there a national study being done on Celiac disease?

 

2 hours ago, Wheatwacked said:

Before giving up on milk, try 100% Pasture Fed. It tastes like the milk the milkman used to deliver. It's omega 6 to omega 3 ratio is 1:1, the same as fish.

 

Does anyone know how to read bloodwork results for celiac I have to wait until the end of July to see the dr?