Help Me Get Started Here.....

[beth01]

Two years ago, I was an accomplished Medical lab tech working full time while juggling two kids as a single mom. I was severely overweight, but I was functioning. Yes I had some health issues, but none that kept me down for long. I then started losing weight like crazy, to date I have lost 156 pounds, I should state that I was a very slender girl for most of my life when I had a great amount of unexplained weight gained. It's not like I was lazy and didn't care. I also started to get forgetful, more problems with my joints, severe muscle cramps, heartburn, >4 migraines a week, my health went down hill. Eight months ago I had to quit my job because I couldn't function anymore. Yes I have been symptomatic my whole life for celiac and it took a long time for me to get this bad, but it happens to some a lot younger than me a lot quicker. You might be asymptomatic, but so were they.

Stress is a big trigger of celiac. It seems you have a lot of stress in your life and it has been ongoing for quite a while. I think you have been feeling a lot worse from celiac for longer than you realize. You state you had syncope issues, that was my daughter's main symptom for the last two years, she's 11. Her antibody level was >100, mine was 35. A celiac is a celiac, one with more health issues and symptoms doesn't make them any more celiac than someone asymptomatic. We're all in first place in the celiac race, we all scored a 100% on our exam, we're all tied.

I know you said your wife was being tested, are your other children? They should be tested every two years, earlier is they are symptomatic. I know gluten free is a hard and expensive life change, but there really are a lot of foods in the store that I used to buy pre-diagnosis that still end up in my cart now. I have one child at home that is celiac and one that is not. I don't look at keeping my household gluten free as " taking away" from my son, he gets plenty of gluteny foods outside of the home. Most recipes for dinner can just have gluteny ingredients substituted for gluten-free, it just takes a little practice. Baking is the hardest for me. I understand the money issues also, I have a 4 person household and only one income. I do sympathize with you. But it can be done. I think it would be easier for both you and your son to stay complaint if the whole household is gluten free, especially with a special needs child that can tend to get into everything and not know any better. I would think it would be actually easier on your wife not having to worry about cross contamination, having multiple small appliances and cookware, things of that sort which can also add on extra expense.I know it seems daunting right now, but it will get easier. And just an FYI on Chinese, make sure the soy sauce is gluten free, most of them have wheat in them.

Complications from celiac can come anytime. Symptoms change all the time, other food intolerance come up, some that make you feel as bad as gluten, and health complications do arise, some very suddenly. Can you live with the risk for the pleasure of eating gluten if it means a stroke? There are people on here who have had very severe reactions to gluten out of left field, never having a reaction so severe. Some of those severe reactions are irreversible. You can cheat all you want, I just wouldn't recommend it. There might not be literature and statistics that we can give you, just personal experience which is what I believe you came here for. It might not sound like it, but we are trying to be helpful.

I know you think that 100% of people aren't 100% compliant all the time, but as others have told you, I am as 100% complaint with my celiac diet as I can be. I won't go out and purposefully eat gluten. I try my very hardest to stay away from cross contamination, don't go out to eat a lot and don't eat food unless it's prepared by me or in my home or someone I know I can trust, which is only my parents and my boyfriend's parents. Would I feel this way if I wasn't asymptomatic? I can't speculate, I just know how I feel now.

I wish you well.

[fetchfelix]

You are being helpful, and the whole reason I am here is I know pt forums are far better for getting information than most medical sites. LauraTX - my son has CVID also  and gets IVIG every 2 weeks. We are certain hoping his autism & behavior issues will improve going gluten free. He is mostly non-verbal but we know he feels awful at a lot of the time, but figuring out why is the issue. Im quite celiac disease is a big part of it. You are absolutely right, perhaps my health issues of the last few years were all related to celiac disease. The problem is Drs only look for their specialty, & celiac disease was never on my radar until my son was diagnosed, and that was only due to his GI suggesting it after his growth fell off. We have been unable to toilet train him, but in the 2 weeks he has gone gluten free he has not pooped in his diaper even once..........He is also doing well in school, so Im quite sure many of his issues have been misdiagnosed for quite sometime. 

 

            When I finally see a GI it will be interesting to see what he thinks of my recent history. I've certainly had every cardiac and neuro test there is going, but having syncope without any obvious cause is an issue. Seeing cardiomyopathy as a complication of celiac disease was certainly interesting as thats what they were thinking I had earlier. Its pretty obvious that I have auto-immune issues and perhaps thyroid too, although thats all been monitored closely. The whole reason I am here is because some years back I had back issues & went through every treatment and therapy only to be told I needed surgery. I knew enough to know I wasn't having that & then joined some forums. That led to me finding an alternative therapy that made sense & fixed my back within a couple of weeks - it also proved to me that the physiotherapy I had been receiving which was conventional treatment was flat out wrong and making it worse. 

 

         There is no substitute to forums like this where you meet hundreds of ppl with real life current experience. I value the information gathered here highly. You can rest assured that having heard from everyone that 100% gluten free is the only way to go..........thats what I will do. My daughter is adopted and is from China so we are not testing her. My other son was negative. My wife is being tested Tuesday & I will be surprised if she is negative. 

 

         So for anyone who has had syncope from celiac disease, what caused that? What is the physiology that explains that? In my testing I had ANSAR testing that was abnormal, I KNOW that my autonomic nervous system doesn't respond normally right now, but the question is why? I think I did read that celiac  can affect that also. I just know my cardiologist did a test (CSM) and I reacted the exact opposite to what I should have. 

Yes, I have a great deal of stress in my life, and a very stressful job. Ever since my event in April I have been working to change all of that, but so far haven't been able to. I need to make life changes & a huge part of that is trying to move somewhere cheaper, but before I can do that, I need to fnd a new job, and Im struggling with that. Thank you for all the answers, its been most helpful. 

 

Felix

[beth01]

It seems to me that celiac can affect someone from head to toe, for no known rhyme or reason, and not following medical protocol at all. I have had so many unexplained medical crap thrown at me and have had doctors scratching their heads for years. It seems like our bodies are different than the other 132 people that walk through the revolving doors.

I am not sure about the cause of syncope as related to celiac, but I can tell you my daughter's has resolved. She was face planting herself into the floor at school a few times a week, between breakfast and lunch. The school was happy about that resolving lol

I also think some of your son's issues will see an improvement. I don't think that gluten-free will be he miracle cure, but it should help. You might want your wife to join here also, or do some research on here, there is a wealth of information and some wonderfully helpful people.

I am glad you have rethought the diet. I really hate to see someone put themselves in harm's way to only suffer down the road as so many of us have. Good luck on your job hunting.

[nvsmom]

I've had issues with fainting a few times in the past. More commonly (up to a few times a day) I would get that tunnel vision one gets when they are a bit faint, and it almost always happened when I was getting up - postural hypotension.  I generally have fairly low blood pressure but it tends to fall more when I stand up. I have a doctor who is giving me fludricortisone to counter that, and it works well. I don't actually pass out very often - only every couple of years - and it is often mixed in with a bit of low blood sugar, extreme heat, or sickness. The rest of the time I just get tunnel vision.

 

I have no idea if tunnel vision is related to celiac disease but I've had it my whole life, and undiagnosed celiac disease too.  I remember as child getting up and walking across the house and testing how far I could get through my house before my vision came back.  LOL    I didn't realize that was abnormal until my mid 30's because it was my life long normal.

 

Best wishes.

[GFinDC]

Hi Felix,

 

Welcome to the forum!

 

You asked about consequences of not following the gluten-free diet.  You are not the first person to think of that idear for some reason, it comes up sorta regularly.  I put some links to particularly interesting threads on the idear from the past below.  And some links for general knowledge you might like.

 

Celiac disease is an autoimmune condition, so you can learn some things about it by studying the immune system.  If you think about immunizations, you know that most times a kid who gets immunized is protected for life.  So the immune system has a good memory when it comes to protecting us from hostile invaders.  The immune system also doesn't stop protecting us a day after it gets attacked.  It will keep fighting until some signal tells it the invasion is over.  That could be weeks or months after a gluten exposure.  So symptoms or damage to the body can continue for that whole period of increased immune attack.  Of course the immune system is attacking our bodies instead of an actual invader, that's why we get symptoms and gut damage.

 

Having a damaged gut can cause mal-absorption of nutrients that our bodies need to heal and function.  Celiacs can be low on B vitamins and some others and also low on some lipids due to poor absorption of fats.  B vitamins are important for nerve health so that's not real good.

 

There is also something called gluten ataxia you otter read up on.  It is immune damage to the brain nerve cells caused by celiac disease.  Not fun.

 

Fainting (syncope) was one symptom I had years ago.  It was never explained by the doctors.   I had a bunch of wires hooked to my head by a tech and a machine that went buzz for a while but they never explained the cause.  I used to just fall over in my chair while sitting at my work computer.  Personally I think it was caused by intermittent (sporadic) blood pressure crashes.  It stopped after I went GFCFSF (gluten-free, casein-free, soy-free).

 

Celiac disease can affect any part of the body.  The immune system is in charge of protecting the whole body, not just the gut.  So any organ can become a target.  Some of those organs are pretty fun to have working well, so that's a bummer when they are damaged.  Over time mal-absoroption also does a a few bad things to peeps bodies.  You can read up on rickets and other conditions caused by mal-absorption of vitamins to get some ideas.

 

I think gluten-free and diabetes are somewhat compatible diets to follow.  I don't have full blown type 2 diabetes but I have to watch what I eat to keep symptoms at bay.  I eat mostly low carb and sort of paleo.  I suggest you consider eating mostly whole foods cooked at home.  That way you control the ingredients and can look in the mirror and yell at the cook when there is a screw-up.  Eating whole foods instead of processed food can be cheaper imho.  All those boxed and packaged foods are higher priced to make up for the cost of packaging, marketing, etc.  When I stopped most processed foods my garbage can was hardly full compared to overflowing b4.  All that packaging adds up to more costs 4 u.

 

Here's a diabetes forum that has helpful people in the chat section.  You may have seen it already.  My younger brother has type 2 and is close to losing his eyesight due to not keeping his diet under control.

 

Open Original Shared Link

 

How bad is cheating?
https://www.celiac.com/forums/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/

Falling off the gluten-free wagon Post #37
https://www.celiac.com/forums/topic/67218-falling-off-the-gluten-free-wagon/?hl=%2Bfalling+%2Boff+%2Bthe+%2Bgluten-free+%2Bwagon

Zero gluten for some celiac patients can help.  Fassano article
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Anger, Quick Temper, Depression
https://www.celiac.com/forums/topic/34917-anger-quick-temper-depression/

A brain in the head, a brain in the gut NY Times  (serotonin, gut depression link)
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[fetchfelix]

The hardest thing for me is going to be Catholic Mass............I already read what I need to do, but I don't like the idea of being so bloody conspicuous...................

[fetchfelix]

Thanks for the links. I already do mostly follow a whole food diet anyway, switching entirely to gluten free probably won't be too difficult. However I've learned a great deal about nutrition the last few years and I take issue with simplistic responses like "you choose what to eat and whether to be ill or not". If it really was THAT simple this nation wouldn't have the obesity problem it has. I've become utterly convinced our food supply is deliberately tampered with to make us crave and eat junk and terrible food. I did switch 100% to no processed food and felt so much better, but I did fall off the wagon and  am really struggling to get back to that............now of course I have more incentive. Its extremely difficult for me to resist foods I really like. The easiest way is not to have access to them...........but that requires everyone else in the household to be deprived also. I LOVE Dorito chips, but I know they spike my sugar way, way high. Most of the time i can resist them, but if Im at work or a party it can be really difficult. I used to   be very critical of very obese ppl, but now I understand that there really is true addiction to sugar, and other items the food companies put in that junk. There is a lot of evidence now that kicking processed food, sugar, HFCS etc can be as difficult as getting off drugs. I do feel some here have forgotten how difficult that can be. Maybe it wasn't for you. 

         

Felix

[knowledge228]

But thats my whole point, I don't feel particularly bad and have none of the issues you've mentioned. The only symptom I can say I've had at times is constipation. I don't feel great now but I have been off my diabetic diet somewhat & I need to fix that. 

Felix, it really sounds like you have made up your mind about what you are going to do.  You want to cheat, then cheat.  You may or may not see or "feel" the effects, but it could be damaging you internally.  It really is a personal choice.  I do agree with a previous post stating that having Celiac isnt like having DM, it is true that everyone manages thier DM thier own way but with Celiac there is really only one way to treat.  Either way good luck to you.

[GFinDC]

Hi Felix,

 

You are welcome for the links.  I don't think I or anyone else said it would be easy going gluten-free.  Starting the gluten-free diet requires quite an adjustment for some of us.  For some the adjustment may be easy.  But that doesn't really matter.  What matters is how it affects you.  All i can tell you is that while it was a rough adjustment at the start, it got easier over time for me.  Maybe it will get easier for you too.

 

Going gluten-free is simple though, or it can be.  Don't eat gluten ever again, pretty straight forward stuff.  Even tiny amounts of gluten will kick off the immune reaction.  gluten-free's not a diet you can do kinda half-way serious like and find success at.  It takes full commitment.  Your bodie's immune system doesn't take days off and relax it's guard because you slipped up.  It'll get cha for slip-ups.

 

You may not have much in the way of symptoms right now, but you can expect your symptoms to worsen in time if you aren't gluten-free.  Continuing damage has a way of making things worse over time.  I don't think you are planning to cheat on the gluten-free diet.  It's pretty common to make mistakes at the beginning of the gluten-free diet tho.  That's one reason avoiding most processed foods is helpful for beginners.  There is less to check up on and worry about with whole foods than there is with processed foods.

 

Oh, regarding the withdrawal process, you should maybe do a search on gluten and opioids.  Here's a link to get you started.

 

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[fetchfelix]

I certainly don't plan on cheating, I never did..........I just wanted to understand the options. I know my diabetes very well and  as someone else said I "eat to my meter" as conventional diabetic wisdom  is weak in my opinion. What can we expect from a Govt that has fundamentally gotten nutrition wrong for 30 years. Im looking forward to seeing the movie "Fed Up". Today I have started trying to stay 100% gluten free but i know its a tradition and its depressing realizing all the things I won't eat. Its not terrible though, I do actually already avoid pretty much anything processed, but now will have to be even more strict than I previously will. Im now keeping a very strict food log to see if I feel any different. Im hopeful I really will as my son is a different child in just 2 weeks!

 

Felix

[GFinDC]

Hi Felix,

 

That's great that your son is doing better!  Not growing up eating junk food can't be a bad thing for him IMHO.  Your are right, it's really up to us to figure out a healthy diet.  The companies selling food are mainly interested in making a profit after all, so they make products lots of people will buy.  The companies do respond to consumer purchasing though, so we now have many more gluten-free food options than a few years ago.

 

Most celiacs in the USA are undiagnosed.  They used to say about 90% are undiagnosed, but I've seen numbers like 85% recently.  That's not a great statistic for the medical community.  Sometimes celiacs are mis-diagnosed with other conditions and treated for years for something they don't have too.  Meanwhile the celiac gets sicker and sicker as the years go by without following the gluten-free diet.

 

 As you can guess from that diagnosis statistic, the majority of celiacs probably die never knowing why they were sick.  What's really a bummer is that doctors sometimes refuse to test people for celiac disease even when the patient requests it and has symptoms.  Several people have reported that here on the forum.

 

This abc news story supposedly gives advice on controlling cravings.  Maybe there's something helpful in there, I'm not sure.

 

Open Original Shared Link

 

And here's a thread about possible cheating on the gluten-free diet.  It might help answer some of yuor concerns from earlier.

 

https://www.celiac.com/forums/topic/109355-do-you-ever-break-down-and-eat-gluten-every-once-in-a-while/#entry930698