Help Me Get Started Here.....

[fetchfelix]

I have SO much going on in my life........I know I could find all this online but don't have time to go searching and figured I would start here. 

I have Diabetes / HTN / Asthma & over past 4 years several admissions for "syncope of unknown cause" for which I've had extensive work ups

My youngest son has Down Syndrome & multiple health issues including Primary immunodeficiency, and was recently confirmed to have Celiac disease & so I was tested too. 

 

Im waiting to hear back from my Dr, but from test results Im pretty sure Im positive too, so a couple of quick initial questions that I need to get answered quickly to get me going. 

 

1. Is an endoscopy essential to confirm, can't you just go gluten free?

 

2. What are the consequences of not going gluten free?

 

3. Do I need any specialist or can family Dr manage this

 

Looking at the lists of things to avoid........french fries? Am I supposed to NEVER have a burger & fries from 5 Guys anymore? Can you cheat a little? Im a nurse, and a diabetic & know it takes an average of 2 years for Pts to really switch their diets.......its incredibly difficult. I can't imagine going 100% gluten free 100% of the time. Im also pretty asymptomatic, maybe some constipation issues sometimes, but I would never have guessed I'd be positive. I know the consequences of not following my diet for my diabetes, and even knowing that Im going to cheat sometimes.........eating is one of lives main pleasures and so I will choose to shorten my life a little to enjoy it more while alive. So my initial thought is just to ignore this. Im 46 and essentially symptom free - so the 1st thing I need to know is what is the consequences long term if I just ignore it? Thanks in advance.

 

Felix

[kareng]

I have SO much going on in my life........I know I could find all this online but don't have time to go searching and figured I would start here. 

I have Diabetes / HTN / Asthma & over past 4 years several admissions for "syncope of unknown cause" for which I've had extensive work ups

My youngest son has Down Syndrome & multiple health issues including Primary immunodeficiency, and was recently confirmed to have Celiac disease & so I was tested too. 

 

Im waiting to hear back from my Dr, but from test results Im pretty sure Im positive too, so a couple of quick initial questions that I need to get answered quickly to get me going. 

 

1. Is an endoscopy essential to confirm, can't you just go gluten free?

 

2. What are the consequences of not going gluten free?

 

3. Do I need any specialist or can family Dr manage this

 

Looking at the lists of things to avoid........french fries? Am I supposed to NEVER have a burger & fries from 5 Guys anymore? Can you cheat a little? Im a nurse, and a diabetic & know it takes an average of 2 years for Pts to really switch their diets.......its incredibly difficult. I can't imagine going 100% gluten free 100% of the time. Im also pretty asymptomatic, maybe some constipation issues sometimes, but I would never have guessed I'd be positive. I know the consequences of not following my diet for my diabetes, and even knowing that Im going to cheat sometimes.........eating is one of lives main pleasures and so I will choose to shorten my life a little to enjoy it more while alive. So my initial thought is just to ignore this. Im 46 and essentially symptom free - so the 1st thing I need to know is what is the consequences long term if I just ignore it? Thanks in advance.

 

Felix

 

 

For your son's health - PLEASE take a few minutes and read some info about Celiac.  He will depend on you to keep him healthy and "ignoring" the gluten free diet will make him sicker and sicker.  I would think that keeping yourself healthy would help him, also?  

 

Open Original Shared Link

[millerb68]

This is a great post on whether or not to "cheat", (which means that you are cheating on yourself). 

 

Open Original Shared Link

[cyclinglady]

I did not ignore it, but did not know that I had celiac disease. My only symptom was anemia (iron) but that was masked by Thalseemia (a genetic anemia). Three months later, two vertabrae fractures (osteoporosis). You do not have to have classic celiac disease symptoms.

I have diabetes too on top of celiac disease (same genes from what I understand), so it is possible to do both!

Here is a link to our newbie thread that contains valuable tips:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[cyclinglady]

Oh, if you can, get scoped. My blood test was barely positive, but my biopsy showed severe damage. Your family GP can order blood tests and manage your celiac disease. A GI will need to do the endoscopy.

Consequences? Too many to list here. The main thing is to stick around for your son!

Put the oxygen mask on yourself first before assisting others!

Take care!

[fetchfelix]

 

For your son's health - PLEASE take a few minutes and read some info about Celiac.  He will depend on you to keep him healthy and "ignoring" the gluten free diet will make him sicker and sicker.  I would think that keeping yourself healthy would help him, also?  

 

Open Original Shared Link

 

You misunderstand, of course I will learn for him.........we already are. But he clearly has signs and symptoms of celiac disease, and has multiple health issues to take care of. We have already seen a significant improvement in him. I am talking about me..........I have no, or minimal symptoms. Its been hard enough adjusting to being diabetic, and i fully understand all the diseases that causes, I see the effects of diabetes all the time. But I don't have symptoms of celiac disease. I will in time read and learn as much as I can and will be an expert........but right now, today, I have 4 jobs, full time school, 3 kids one of whom has special needs and behavioral issues and we are soon to adopt 2 more special needs children from China. Suddenly finding I have to radically change my diet is.............daunting.  Thats why I had specific questions for what to do now. If I understood the long term consequences of not following, or "cheating" occasionally it might help me. I understand ppl who "cheat" have immediate symptoms and feel much worse, and who knows maybe I will feel much better after going gluten free. But Im not really aware of any symptoms now.............Motivating people to change their lives is notoriously difficult, thats what Im needing immediate health with

[kareng]

You misunderstand, of course I will learn for him.........we already are. But he clearly has signs and symptoms of celiac disease, and has multiple health issues to take care of. We have already seen a significant improvement in him. I am talking about me..........I have no, or minimal symptoms. Its been hard enough adjusting to being diabetic, and i fully understand all the diseases that causes, I see the effects of diabetes all the time. But I don't have symptoms of celiac disease. I will in time read and learn as much as I can and will be an expert........but right now, today, I have 4 jobs, full time school, 3 kids one of whom has special needs and behavioral issues and we are soon to adopt 2 more special needs children from China. Suddenly finding I have to radically change my diet is.............daunting.  Thats why I had specific questions for what to do now. If I understood the long term consequences of not following, or "cheating" occasionally it might help me. I understand ppl who "cheat" have immediate symptoms and feel much worse, and who knows maybe I will feel much better after going gluten free. But Im not really aware of any symptoms now.............Motivating people to change their lives is notoriously difficult, thats what Im needing immediate health with

Did you check the link I gave you? It is an easy to understand website. It states that you must always be gluten-free, even if you think you have no symptoms.

If you are changing your child's diet, you can go gluten-free with him. If managing your illnesses and his and your other kids and your job and school are too much, maybe you need to cut back a bit? You are just 1 person with 24 hours in a day.

[beth01]

I have had symptoms of Celiac for over 30 years and was diagnosed 5 months ago.  Look at my signature to see what long term gluten eating does to a person when they don't know they have Celiac. There are a whole lot more people on here that have had the same.  It's not a fun life and a long hard road to recovery.  How are you going to take care of all those kids if you feel like s$#&?

[fetchfelix]

Did you check the link I gave you? It is an easy to understand website. It states that you must always be gluten-free, even if you think you have no symptoms.

If you are changing your child's diet, you can go gluten-free with him. If managing your illnesses and his and your other kids and your job and school are too much, maybe you need to cut back a bit? You are just 1 person with 24 hours in a day.

Yes, I was just reading it, and it tells me nothing. I've been in nursing 24 years, I've seen a lot of things come and go, a lot of diseases and treatment plans that were bogus. I've had 4 admissions for life threatening issues in the last 4 years, very unlikely to be celiac disease related but who knows. What I do know from a lot of reading and a lot self testing is that the VAST majority of nutrition or dietary advice is BS period. Who the heck knows what is truly healthy to eat? I've read so many books on that, and research studies and now understand how little is known and understood. Yes, I read that blog and right off the bat I discover that this community is divided................wow, shocker. I do know this, we are all different and no one advice suits everyone. I know how to control my sugars, and its based upon trial and error for me, not the BS put out by most nutrition or American Diabetic Assoc. So you see, right from the start Im suspicious because of my experiences there. 

           What is the right diet for diabetics? Any disease, has so much information available, but sorting the good from the bad is extremely difficult & time consuming. Ive had to make significant life changes in recent years, going gluten free will be another. I would LOVE to find that my admissions were somehow related to celiac disease as frankly thousands of dollars in testing & admissions haven't turned up anything else. At 46 maybe this is all complications of celiac disease. Do you develop this or have I always had it? As for cutting back..........LOL. Do you think Im choosing to work 4 jobs & do FT school? Long detailed story. I am trying desperately to make changes, but a lot of things are out of your control. The added burden financially & time wise of this diagnosis is significant and depressing. Believe me, I intend to be around for my kids, but Im not going to completely & utterly change every aspect of my diet until I fully understand. Listen, for 20 years I followed all  the Govt BS about eating FAT to avoid heart disease. And guess what, for 30 years they've been completely wrong. Dietary fat has no bearing on fat within your body. Thats one thing Ive proved to myself easily. Increasing my fat helped all my lipids, and helped my blood sugar control. Notice I came here 1st, because I want to hear from ppl with the disease 1st & foremost, I don't have a lot of trust in official sources. 24 years in healthcare makes you a little cynical!

 

Felix

[fetchfelix]

I have had symptoms of Celiac for over 30 years and was diagnosed 5 months ago.  Look at my signature to see what long term gluten eating does to a person when they don't know they have Celiac. There are a whole lot more people on here that have had the same.  It's not a fun life and a long hard road to recovery.  How are you going to take care of all those kids if you feel like s$#&?

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. 

[kareng]

Yes, I was just reading it, and it tells me nothing. I've been in nursing 24 years, I've seen a lot of things come and go, a lot of diseases and treatment plans that were bogus. I've had 4 admissions for life threatening issues in the last 4 years, very unlikely to be celiac disease related but who knows. What I do know from a lot of reading and a lot self testing is that the VAST majority of nutrition or dietary advice is BS period. Who the heck knows what is truly healthy to eat? I've read so many books on that, and research studies and now understand how little is known and understood. Yes, I read that blog and right off the bat I discover that this community is divided................wow, shocker. I do know this, we are all different and no one advice suits everyone. I know how to control my sugars, and its based upon trial and error for me, not the BS put out by most nutrition or American Diabetic Assoc. So you see, right from the start Im suspicious because of my experiences there.

What is the right diet for diabetics? Any disease, has so much information available, but sorting the good from the bad is extremely difficult & time consuming. Ive had to make significant life changes in recent years, going gluten free will be another. I would LOVE to find that my admissions were somehow related to celiac disease as frankly thousands of dollars in testing & admissions haven't turned up anything else. At 46 maybe this is all complications of celiac disease. Do you develop this or have I always had it? As for cutting back..........LOL. Do you think Im choosing to work 4 jobs & do FT school? Long detailed story. I am trying desperately to make changes, but a lot of things are out of your control. The added burden financially & time wise of this diagnosis is significant and depressing. Believe me, I intend to be around for my kids, but Im not going to completely & utterly change every aspect of my diet until I fully understand. Listen, for 20 years I followed all the Govt BS about eating FAT to avoid heart disease. And guess what, for 30 years they've been completely wrong. Dietary fat has no bearing on fat within your body. Thats one thing Ive proved to myself easily. Increasing my fat helped all my lipids, and helped my blood sugar control. Notice I came here 1st, because I want to hear from ppl with the disease 1st & foremost, I don't have a lot of trust in official sources. 24 years in healthcare makes you a little cynical!

Felix

Well....this scares me for your child's sake. If you think celiac Disease and the gluten free diet as the treatment is a bunch of BS...... I am not sure how we can help you. I wish you well. And I hope you do the right thing for that child who can't decide for himself.

[beth01]

You might not feel bad now, even though it seems like something has been wrong if you have had multiple hospital admissions with no resolution, but you will if you don't go 100% gluten free. There really isn't much more I can say, you asked what the consequences were of not going gluten free and I told you. I don't mean any of this to sound b%$@#y, I am just amazed when people ask about cheating, no food is worth it to me. Is it expensive?  Yes, but so are medical bills.  Is it a pain in the ass to have to read every label in the store?  Yup, but it will be even more so when you have no energy to even get to the store to read the damn labels, or too bad of brain fog to even remember to go to the store.  Just saying

[fetchfelix]

Well....this scares me for your child's sake. If you think celiac Disease and the gluten free diet as the treatment is a bunch of BS...... I am not sure how we can help you. I wish you well. And I hope you do the right thing for that child who can't decide for himself.

Thats not what I said, and you are completely misunderstanding me, and again what I do for my child is completely different. We are already trying to go completely gluten free for him, not easy when he eats very little to begin with and has multiple other issues. As I keep saying, I was asking about me. Apart from anything else I am away from how when working so MY diet & HIS diet are frequently different anyway as we are not at the same meals. My wife is dealing with him more than I. I didn't say anything about gluten free being a bunch of BS, go read what I wrote again

[kareng]

Thats not what I said, and you are completely misunderstanding me, and again what I do for my child is completely different. We are already trying to go completely gluten free for him, not easy when he eats very little to begin with and has multiple other issues. As I keep saying, I was asking about me. Apart from anything else I am away from how when working so MY diet & HIS diet are frequently different anyway as we are not at the same meals. My wife is dealing with him more than I. I didn't say anything about gluten free being a bunch of BS, go read what I wrote again

MY thought was... If you don't feel a gluten-free diet is important for you... Why would you think it is important for the child? I am glad that your wife is watching over him and feels it is important. You are an adult and a nurse and can read and understand the medical information.

[LauraTX]

Celiac disease is a little bit more cut and dry than a diet to control diabetes.  If you have Celiac disease, gluten=bad.  Please read through the links the previous posters have provided for you, they put a lot of thought into digging them up for you, and the sources put great effort into putting that information out there.  Click around and read all the great information on the cureceliac website (U of Chicago Celiac Disease Center) and it may help you get a better understanding.  However, if you do not have the drive to properly care for yourself, no one can change that but you.  I understand the many challenges of life, some have more challenges than others, but you do need to be around to care for your kiddos.  No one on this forum is going to give you a free pass to cheat.

 

Facing a diagnosis of a permanent disease that changes the way you live your life is a grieving process, in a way.  Acceptance may take a long time, and you can try to bargain with yourself all you want, but that will not change the reality of the situation.  If you are having a problem with the motivation to take care of yourself properly, you may want to go speak with a counselor about that, it can help tremendously when you have a lot on your plate in life.  There are a lot of great, helpful resources and people on this forum, but unfortunately none are going to support noncompliance with a gluten-free diet.  If you choose to do what is actually needed to take care of yourself and eat gluten-free, we will be here to help.  

[beth01]

Let me ask you this.... As a nurse, would you advise a patient to "cheat" on a diet?  I hope not.

 

You know the progression of diabetes in a noncompliant patient: blindness, amputations, dialysis, kidney transplants.  There is a progression in celiac. If you are non complaint you have a higher risk of intestinal cancer, lymphoma, not to mention all the 300 other symptoms that are associated with celiac disease. You are also at a greater risk for more AI issues, and as a person with multiple AI's, I wish I could go back to when I felt somewhat normal( if any of us know what that is) and be able to go gluten free earlier. Like Laura said, there aren't many on here that are going to give you a free pass to cheat, tell you it's ok.  Even the people on here that are asymptomatic.

[fetchfelix]

MY thought was... If you don't feel a gluten-free diet is important for you... Why would you think it is important for the child? I am glad that your wife is watching over him and feels it is important. You are an adult and a nurse and can read and understand the medical information.<<<<<<<<<<<

 

Why do I think its important for my child? Because he has symptoms and isn't growing, we both think its important for him for goodness sake Im talking about me and my choices. 

 

>>>>>>> You are an adult and a nurse and can read and understand the medical information.<<<<<<<<<<

 

Yes, and I've watched that change over time - MANY things I did at the start of my career are considered wrong today. Look at the history of dietary fat and heart disease as just one example. 

 

>>>>>>>>Let me ask you this.... As a nurse, would you advise a patient to "cheat" on a diet?  I hope not.<<<<<<<<<

 

Im a realist. I tell patients what they need to know, but very, very few are 100% compliant 100% of the time with anything. 

 

You know the progression of diabetes in a noncompliant patient: blindness, amputations, dialysis, kidney transplants. <<<<<<<<<<

 

Yes, I & know that the key to avoiding those is keeping my sugar below 140 at all times (not the 180 the ADA  recommends). I achieve this 80-90% of the time. I know certain foods will put my sugar up over that number, and  I know that at that time damage is being done........and i live with that. Thats my choice, I might not live long enough to have all the above. Fact is most of the time I keep my sugars lower than the 180 the ADA recommends. Overall I follow Michael Pollens dietary advice, but as he says 80% of the time. Its very difficult to be good 100% of the time.

 

>>>>>There is a progression in celiac. If you are non complaint you have a higher risk of intestinal cancer, lymphoma, not to mention all the 300 other symptoms that are associated with celiac disease.<<<<<<<<<

 

Ive read that but the cancer risk and especially lymphoma risk is still very low. 

 

>>>>>>>free pass to cheat, tell you it's ok.  Even the people on here that are asymptomatic.<<<<<<<<

 

Im not looking for a free pass - look at my original post, i asked what the consequences were of occasional cheating, specifically if I ate a burger & fries at 5 guys very occasionally. I know the effect on my sugar, and the damage that causes, which science currently shows as nerve damage for  the time the sugar is high, which may only be a couple of hours. Im prepared to live with that risk for the pleasure of eating the foods I eat. What I don't know, and still haven't found, is the consequences of that on celiac disease. Does it cause immediate damage, does it cause inflammation for a few days, weeks, months? I know some ppl are extremely sensitive and have symptoms. I understand I may in the future. Im just trying to find the science that says avoiding gluten 100% of the time makes a huge difference 100% of the time, for 100% of the patients. The medical literature is replete with examples of medical advice that was later proven to be without basis, or worse, harmful. 

 

            Yes, it is a grieving process to suddenly have to change your entire eating habits. Research shows it takes the average diabetic 2 years to fully accept the diagnosis and truly change their lifestyle. It was very hard for me and my work showed me the effects of non compliance every day. In my day to day work I routinely see people die from heart attacks & strokes. I don't see that from celiac disease which is why I was asking about long term consequences. Life is full of choices, and Im planning on being well informed, even if not 100% compliant. We are trying to be 100% compliant with my son..........but even that will be impossible as we're not with him all  the time and he gets into food he shouldn't. Only way to completely avoid that is to have no gluten in the house but that isn't fair on the other kids. I appreciate the help and links, and have read them. I said that 1st guys blog didn't answer any questions - he strongly believes all CDs should be 100% gluten free all the time, but human beings aren't that way. I just want to understand if its truly proven scientifically that ALL celiac disease pts should be 100% compliant all the time. I am well aware there are cases that need to be, some reactions like anaphylaxis prove that. motivating any pt is the most difficult thing - you all are special because you are highly invested in THIS disease & obviously devote yourselves to it. Not everyone will be that way, don't be offended, thats just life. As a nurse my responsibility is to educate & help people - they make their own choices, as do I. 

 

Felix

[cyclinglady]

I am a diabetic who follows the LCHF diet in order to maintain normal blood sugar. I "eat to my meter". I also have celiac disease. I am 100% compliant with my gluten-free diet. So, it can be done. Do I cheat? Only on the LCHF diet and that is because I do not always have access to safe food and I will eat a gluten-free cookie rather than starve (this occurs usually on vacation and out of the country). I never cheat on my gluten-free diet.

I have researched diabetes and I was not impressed about the ADA recommendations. There is a lot of controversy regarding diabetic care. It is confusing for most patients. However, all research regarding celiac disease indicates that avoiding all gluten is the only "cure" for celiac disease. I have yet to find a study that refutes that.

When you go gluten-free, I bet you will feel an improvement in your health -- you just probably chocked it up to aging.

My home is gluten-free. My husband has been gluten-free for 13 years. Our daughter is not. She gets her gluten at school. It is too hard to manage gluten in our house. Besides, it is our house! Our health is more important than her need for wheat bread. It is that simple.

BTW, my husband is on the LCHF diet to help me out. I suppose they sneak out of the house for their sugar fixes!

I wish you well.

[fetchfelix]

What is LCHF diet? 

 

 have researched diabetes and I was not impressed about the ADA recommendations. There is a lot of controversy regarding diabetic care. It is confusing for most patients.<<<<<

 

Yes, exactly my point. I eat to my meter & know exactly how to control my sugars. For me at least the whole glycemic index is BS, my body just doesn't react the way those indexes say it should. Through a lot of trial and error it has taken me time to figure out what I need to do, and it is still extremely hard. Easiest way to avoid bad foods & junk food is to not have access to it, but with 4 non-diabetic family members thats hard. Adjusting to my sons diet is difficult enough - I would love to have the house go over to a diet based almost entirely upon Michael Pollens "Eat food, not too much, mostly plant". We have way too much junk in our home, even though its WAY less than most. 

 

            My wife is yet to be tested, but frankly Im kind of hoping she is celiac too as that will make it a whole lost easier. Her mum certainly had issues, and reading the symptoms I would say she has a much higher risk of me having it. She gets tested this week, and if she is positive too then it will be a  lot easier to change everything, except for the expense and time preparing foods. So far she is finding it takes a lot more time to organize everything, in shopping and food prep. Understand we already have a lot of other things going on with his other health issues and we are very financially strained. We are about to adopt two older children from China, so we will be cooking a lot more Chinese food anyway which tends to be more gluten free anyway. Before anyone judges me for doing all this, there have been other changes in our life this past year beyond our control. I am now trying very hard to move to a cheaper part of the country, but medicaid issues in different states, and not getting hired is making that tough. 

 

When you go gluten-free, I bet you will feel an improvement in your health -- you just probably chocked it up to aging.

 

I certainly hope thats true - I certainly feel very aged in the past 4 years. I have been monitored closely for several years. Im fit, not overweight,yet have several complications of diabetes already, HTN, some eye issues and bowel issues which i now know may well be from celiac disease. Everyone assumed it was all diabetes. My 4 admissions in the past few years were for "syncope of unknown cause". Ive had a week long video EEG, multiple MRIs, and MRAs, and had an arrhythmia monitor implanted for 2 years. That was removed I was cleared  & there was no clear diagnosis and I had no issue for 3 years. Then this year I ended up being diagnosed with cardiomyopathy, but then that was reversed (actually very difficult to diagnose correctly) and I had multiple tests and was not allowed to work............at a time when I am extremely financially stressed. Adding the expense of going gluten free is something I will do if I know I have to, but the point is I have to be sure. Look at diabetes. When I started my career Type II never needed insulin, but now they know most type II WILL need insulin eventually. There's just so much we still don't know and understand. Im glad celiac disease does appear to be more cut & dried. 

 

Felix

[kareng]

Just a comment on Five Guys .  They are usually pretty Celiac friendly if you don't eat the bun.  The fries are the only thing fried in the fryer and most have an "allergy" protocol.  

[fetchfelix]

I wonder if they would use your own bun if you brought it in and asked.........?

[kareng]

I wonder if they would use your own bun if you brought it in and asked.........?

That is a health department issue. The best strategy has been to ask for the burger plain or on lettuce. Keep the gluten-free bun in your pocket, purse, etc. Add your own bun at the table.

[fetchfelix]

Yeah, that would work...............I only just discovered Five Guys last year after 20 years in the USA.........its not like I  go there much. I really don't eat much bread or really anything with gluten anyway, so the burgers were the 1st thing I thought of......LOL. I feel bad for my son, he doesn't eat well to begin with and pretty much everything he has has gluten. Understand he has down syndrome, autism, primary immunodeficiency, asthma, hypothyroidism and now celiac disease. We're hoping that the gluten free will really help with all those, especially his behavior. But at this point the poor kid (developmentally 4-5) just knows we're taking away ALL his favorite foods..........although my wife has already found some awesome alternatives its still very early days, only a couple of weeks for him and 24hours for me.........

 

Felix

[LauraTX]

Yeah, that would work...............I only just discovered Five Guys last year after 20 years in the USA.........its not like I  go there much. I really don't eat much bread or really anything with gluten anyway, so the burgers were the 1st thing I thought of......LOL. I feel bad for my son, he doesn't eat well to begin with and pretty much everything he has has gluten. Understand he has down syndrome, autism, primary immunodeficiency, asthma, hypothyroidism and now celiac disease. We're hoping that the gluten free will really help with all those, especially his behavior. But at this point the poor kid (developmentally 4-5) just knows we're taking away ALL his favorite foods..........although my wife has already found some awesome alternatives its still very early days, only a couple of weeks for him and 24hours for me.........

 

Felix

I bring my own buns into places.  I just wait until after I get my food and then bring it out and no one ever notices.  Some people have had issues when they are obvious about it/ask them to put the bun on there for them instead of doing it themselves.  

 

I have common variable immunodeficiency and lupus along with Celiac, and many other secondary conditions.  My immunologist will go on long lectures about how important it is to to take care of all three, or none will be under control.  Because I want to retain what health I have remaining, I am 100% compliant with treatments, including my gluten-free diet, medications, and IVIG therapy.

 

For the kiddo, there have been many discussions in the past that may be helpful... search and there will be a lot there for you.  Trying to get things kids will eat is difficult and many here have gone through that.  It will take some time to adapt recipes and such, but after some time once he gets used to the new versions of his foods, it should become smoother, and will very likely help out some of his health issues.  If you have any other biological children, it is a good idea to get them screened as well in case one has Celiac cropping up yet still undetected.

 

If you are looking to cut costs of the gluten-free replacement foods, check out the King Arthur Flour gluten-free line I linked you to before... if you make stuff with recipes using just the flour and not mixes, it saves a good bit.  But sometimes when you are buying for just one person, the savings over buying premade stuff may not be a whole lot.

 

Also, LCHF is low carb, high fat.

[nvsmom]

I haven't read this entire topic but would like to warn you against cheating.  The autoantibodies can stay positive in the body for YEARS after you go gluten-free. They don't stop being produced the moment you cut gluten from your life.  I personally had autoantibodies (as shown by my tTG IgA test) still positive at about a year gluten-free, and I was even on some steroids at the time that would most likely have reduced it further.  I have not accidentally, or purposefully, eaten gluten in about one and a half years now.  I'm not sure if my tTG IgA is still positive but I would not be surprised.

 

If you cheat, you will keep ramping up the autoimmune attack and experience the inflammation that goes along with it.  You may not have symptoms now, or at least obvious intestinal related ones, but if you continue to eat "gluten-light" the symptoms, or other celiac related diseases, will probably appear one day and they could end up being life threatening.  Eating gluten is a huge risk that could kill you in the next few years if you are unlucky.

 

BTW, one of my sons is very mildly autistic and going gluten-free helped with his behaviour a great deal.

 

Best of luck with whatever you decide to do.