Choosing against gluten-free?

[Amy in Austin]

All, I am new to this group. I am hoping that I might be able to gain insight from your experience. 

I was officially diagnosed (blood markers and endoscopy) with celiac disease almost two years ago. Upon diagnosis, I immediately began to make changes in my diet. I was able to cook tasty meals that I was used to with substitutions. Although I am usually able to find a gluten-free meal in restaurants, it is often tasteless and expensive. Worse than that, I have been poisoned several times while traveling or having dinner at a friend's house..... and especially at church potlucks. I will often pack my own food, but I find it socially isolating and really unsatisfying. When I sit at a table with people around me eating delicious gluten laden dishes, I want to cry. I compare it to a recovering drug addict who lives in a crack house. 

On the occasions that I do inadvertently ingest gluten, and I have been eating "clean", I get catastrophically ill.  Not only do I experience lower GI problems, but I also feel sore and feverish..... kind of like when you are coming down with the flu. However, if I am about to travel somewhere where I know I am highly likely to get accidentally poisoned with gluten, I will ramp up several days before. I'll eat tiny amounts (a cracker here, soy sauce, a piece of bread there..... avoiding gluten overload like pasta or gravy) of gluten. I'm pretty sick on the first day, but after that I'm just a little bit sick all of the time. Most importantly, I do not get catastrophically ill on the vacation.  I find this an easier state of existence, and wonder if I should consider this during my every day life.

Here is my question:

If I have officially been diagnosed, and knowingly ingest small amounts of gluten, am I shortening my life? Am I being irresponsible as a patient? Have any of you had these same thoughts? I just really miss my old diet. I was happier before I was diagnosed.

I am miserable. 

Amy

[Jmg]

Hi Amy and welcome

I'm sorry to see you're suffering on the diet. Still more that you're miserable in one of the finest cities in the world and one of my favourite places

49 minutes ago, Amy in Austin said:

If I have officially been diagnosed, and knowingly ingest small amounts of gluten, am I shortening my life? Am I being irresponsible as a patient?

Frankly yes. There's lots that's still being learnt about celiac and gluten's wider effects, but the risks to celiacs of non adherence to the diet are well established. There's increased chance of intestinal cancer or developing other auto immune conditions:

Open Original Shared Link

Quote

the work of Corrao and colleagues revealed that compliance with a gluten-free diet correlates with mortality.8 in patients adhering to a strict gluten-free diet, the standard mortality rate was not increased compared with the general population; the standard mortality rate was doubled in patients who were considered to be unlikely to follow a strict gluten-free diet and was six times higher in patients definitely not on a strict gluten-free diet.

I can't find the paper at the moment but there's increased morbidity in patients that are simply careless on the diet, say slipping up once a month.  What you're describing is essentially rolling the dice on some unpleasant outcomes and all you're getting from it is feeling sick and causing anxiety. 

49 minutes ago, Amy in Austin said:

I am miserable. 

Have you considered the possibility that part of this misery lies in you occupying a halfway house, not fully on the diet so not getting the health benefits, but not fully living the gluten lifestyle so still feeling left out and isolated?  

Also have you considered that the gluten may be causing anxiety and depression? It acts on the brain in a very odd way, like an opiod. Sometimes only a longish time excluding it is enough to break that cycle. 

Consider getting some counselling, this is a difficult thing to master. It definitely helped me. 

Consider reaching out to other celiac/gluten sensitive people within your area. They will be able to help, they will understand, they can recommend great places to eat, good strategies for when you can't find safe food etc.

And continue posting here. There's lots of good people who will help you.

Best wishes from the UK

Matt

[cyclinglady]

30 minutes ago, Amy in Austin said:

All, I am new to this group. I am hoping that I might be able to gain insight from your experience. 

I was officially diagnosed (blood markers and endoscopy) with celiac disease almost two years ago. Upon diagnosis, I immediately began to make changes in my diet. I was able to cook tasty meals that I was used to with substitutions. Although I am usually able to find a gluten-free meal in restaurants, it is often tasteless and expensive. Worse than that, I have been poisoned several times while traveling or having dinner at a friend's house..... and especially at church potlucks. I will often pack my own food, but I find it socially isolating and really unsatisfying. When I sit at a table with people around me eating delicious gluten laden dishes, I want to cry. I compare it to a recovering drug addict who lives in a crack house. 

On the occasions that I do inadvertently ingest gluten, and I have been eating "clean", I get catastrophically ill.  Not only do I experience lower GI problems, but I also feel sore and feverish..... kind of like when you are coming down with the flu. However, if I am about to travel somewhere where I know I am highly likely to get accidentally poisoned with gluten, I will ramp up several days before. I'll eat tiny amounts (a cracker here, soy sauce, a piece of bread there..... avoiding gluten overload like pasta or gravy) of gluten. I'm pretty sick on the first day, but after that I'm just a little bit sick all of the time. Most importantly, I do not get catastrophically ill on the vacation.  I find this an easier state of existence, and wonder if I should consider this during my every day life.

Here is my question:

If I have officially been diagnosed, and knowingly ingest small amounts of gluten, am I shortening my life? Am I being irresponsible as a patient? Have any of you had these same thoughts? I just really miss my old diet. I was happier before I was diagnosed.

I am miserable. 

Amy

I am sorry that you are struggling to maintain a gluten free diet on a daily basis and in all social situations.  

Will your life be shortened?  Who knows?  I can tell you that I was not diagnosed until after I was 50.  I had plenty of time to damage my body permanently.  I have Hashimoto’s, which despite being treated with hormone replacement, still wreaks havoic in my life.  I also have chronic gastritis despite having a healed small intestine (just had a follow-up endoscopy) where they removed a polyp that fortunately was not malignant and GI suspects autoimmune as the cause.   I fractured my back two months after my diagnosis and have been working hard just to maintain my bone density, but the reality is that I have osteoporosis and at my age, it is not going to get much better. Then there is my six month bout of autoimmune hives last winter and some issues with teeth due to celiac disease.  I am praying that I do not develop lupus or RA as it runs in my family.  

So, this is not just about celiac disease damaging the small intestine, but other autoimmune issues or systemic damage that can develop from from untreated celiac disease.  

Have you had follow-up care?  Maybe seeing if your antibodies are elevated will help you adhere to the diet.  What about a follow-up endoscopy?  

But do not just listen to me.  Listen to Bartfull.  She, like many of us, found out that she had celiac disease much too late.  She did not have access to the best healthcare either, but she stuck to the gluten free diet.  She tried.  She did her best.  I still miss her wit and common sense advice.  I think of her every time I pick up my flute.  I know she would want to help you.  In a way, she might.  

 

[Amy in Austin]

Thank you, Matt and Cyclinglady. I think I needed to hear that from fellow celiac folks instead of folks that have not walked in my shoes. I think the counseling might be a good idea. I appreciate the time you took to reply. I will stay and learn here! 

Amy

[Nikki2777]

I really do second the counseling suggestion -  you need to find a way to gain power over these feelings of isolation you get from following the gluten-free diet -- you are taking power over your own health, you are taking power over  your own choices and well-being.   By choosing to save your life, you are acknowledging that there are other joys in life beside food - friendship, conversation, travel, love... you know, life.  And, all the better,  if you can find a way to cook your own meal, eat safely and join in the conversation at pot-lucks, you are choosing to value yourself.  Good luck.

[Wheatwacked]

Amy, Yes the wheat affects the opioid receptors so you are addicted to wheat. That is why it is in most foods. In addition to fighting the cravings, you will be mourning the loss of a very old and dear friend. I found a research study on the quality of life relative to undiscovered celiac disease. Life is better without wheat. Read the previous posts. I had problems since youth, some I had been convinced were just normal, that just have gone away. I guess it was not normal, but who knew? The same day I stopped being addicted to wheat, I was no longer addicted to alcohol, after 40 years. That is more than coincidence.

For your sadness: I found high doses of vitamin D life changing. Less than 5K a day, though had no noticeable effect. 10k almost had me dancing after years of deep depression.

Try this: Wonderful Pistachios Sweet Chili Flavor 

Almost by definition you are malnutrition, so get your doctor to run tests for that.

PBS has a show called "Wheat Belly" it will encourage you.

[Amy in Austin]

I should have also included that I was diagnosed with Scleroderma in my late teens. My disease is stable, but as we all know, autoimmune dysfunction likes to cluster. I have been receiving steady rheumatological care, but have not been in for another endoscopy since diagnosis.

Also, as I suspect many of us have encountered, the celiac was misdiagnosed for almost a decade. Many of my symptoms were attributed to my Scleroderma and IBS. I was only diagnosed with celiac after a rapid drop in weight (20 lbs, and I was thin to begin with) and severe anemia. 

Thank you all so much for your suggestions. I will take ALL of them to heart.  

One more question: Have many of you tested your children for celiac? 

 

[cyclinglady]

I have one kid and she tested negative (complete panel).  She seems to be doing okay.  Thyroid good and no anemia (the way I presented).  She is due for another panel, but drawing blood is horrible for her.  They have to use a Ped needle.  It is painful, no matter how competent the phlebotomist.  AI issues run amok on both sides of the family.  

She is gluten light.  I make sure she gets gluten outside of the house.  Prior to testing, I make sure she gets three months solid of gluten daily.  

Our PCP had no issue testing her, but I did bring in supporting data.  

[kareng]

4 hours ago, Amy in Austin said:

I should have also included that I was diagnosed with Scleroderma in my late teens. My disease is stable, but as we all know, autoimmune dysfunction likes to cluster. I have been receiving steady rheumatological care, but have not been in for another endoscopy since diagnosis.

Also, as I suspect many of us have encountered, the celiac was misdiagnosed for almost a decade. Many of my symptoms were attributed to my Scleroderma and IBS. I was only diagnosed with celiac after a rapid drop in weight (20 lbs, and I was thin to begin with) and severe anemia. 

Thank you all so much for your suggestions. I will take ALL of them to heart.  

One more question: Have many of you tested your children for celiac? 

 

I had my kids tested.  They were negative.  One has been retested when he had some issues that could have been from Celiac.  They were not from Celiac.  If they were younger, I probably would have followed the recommended test every two years.  

[ravenwoodglass]

All my family members got tested but not until six months after I was diagnosed.  They didn't really believe my diagnosis at first I think because I had so many before my celiac was discovered.  After watching my healing I was able to convince them to test. Both kids tested posiive, one with blood and one with both blood and biopsy. My ex even tested and he was positive also.  As Karen said with little ones they should be tested every two years even if they don't seem to have any tummy issues. Celiac can affect much more than the GI system. It can impact learning and mood so screening young people is really important.