Non Celiac Gluten Intolerance & Family doesn't believe me!!

[Celina]

After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place!

So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. 

I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. 

Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. 

After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. 

Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing?

 

Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me.

 

If anybody has any advice, I would greatly appreciate it! 

[GFinDC]

Hi Celina,

I don't know if you are aware there is a skin rash associated with celiac disease?  It is an autoimmune condition like celiac disease and is called DH (dermatitis herpetiformis).  DH usually appears on both sides of the body.  It is caused by IgA antibodies in the skin.  If you have DH, they can test for it by taking a small skin biopsy from next to a lesion.  Also, if you have DH, then you have celiac disease, as only people with celiac disease get DH.  There is a section of the forum for DH and it has more info and threads.

I suggest you stop expecting your parents and other people to take care of your diet needs.  The gf diet is hard enough for us to learn and expecting other people to learn it and be aware of all the issues and avoid cross contamination while preparing foods is risky IMHO.  It's much better to control your food yourself and know exactly what you are consuming.  Since you are in a shared household with gluten eaters you will have to be aware of cross contamination and avoid it.  You are the only person in your house who is responsible for keeping your diet gf.  That's just how it has to be.

There is a thread titled "Newbie 101" in the "Coping With" section that might help.

Yes, NCGS is real and about 6% of people have it compared to 1% who have celiac disease.  So it is actually more common than celiac.

Welcome to the forum Celina!

 

[Zodi1993]

Hello Celina,

You mentioned that you are living at home because it is more convenient. I admire that you are going to nursing school but maybe you might want to consider moving out so you can better control what you are eating. Being in school is stressful, worring over every meal is even more stressful. Anxiety alone is tough on your body and can increase your stomach acid which can lead to more symptoms. I'm sure your family loves you but is a little overwhelmed with your dietary restrictions. I agree with GFinDC that you need to take control of your diet and environment.  

Cross contamination is real, especially to those who have Celiac Disease or Gluten sensitivity and many families struggle with this. So give your family some time. 

Welcome to the forum! 

[Jmg]

Hi Celina,

Welcome to the forum!  This site has loads of info and a lot very knowledgeable folks who have been through very similar experienced. So you've not only found a great resource, but hopefully you won't feel so alone in this also.

There's a lot in your post I identified with:

3 hours ago, Celina said:

I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups.

I also went through coeliac testing and wound up with a negative diagnosis. It's strange, normally when you're told you don't have a serious condition it's a total relief, but when you're looking for an answer to symptoms which are both scary and life impairing it's almost a disappointment that leaves a bittersweet feeling.  Like you I was left with NCGS as a diagnosis via exclusion and other than the gastro telling me to avoid gluten for life based on my reactions to it that was the end of the medical profession's interest. 

So first things first. You have this hard won knowledge:

3 hours ago, Celina said:

The gluten free diet has made me feel FANTASTIC!!!

Which is the most important thing of all. YOU know how you feel on gluten and off it. You know this is real and you know how important it is to stick to the diet. You have a lot of healing and recovery in front of you. So your task is twofold, you need to find a way to eat safely at home and you need to communicate this to your family so they can get a better understanding of you and your condition. 

For the first I think you have to respectfully and tactfully begin preparing your own food. You could do this in batches at the weekend if college doesn't leave you much time. Make some bigger meals you can freeze into portions etc. Make sure you tell your family that this is not about them or their cooking! It's something you need to do to heal and to train yourself to live with this restriction. You can still eat with your family, share the washing up etc but this will both ensure you can avoid any mishaps and also demonstrate how seriously you're taking this. You'll need a cupboard and your own chopping board, mixing spoon, colander and a pan to avoid the risks of cross contamination. As above the newbie thread will help.

Taking those steps will also help in the second job of communicating this to your family. If they can see you're taking this so seriously they'll begin to see it as less of a fad and more of a considered adult choice. You also need to educate yourself and then them about this condition. 

3 hours ago, Celina said:

Why does my family act this way and how can I deal with this?

They react this way because they don't understand. When the average person thinks of gluten free they think fad diet, first world problems, neuroticism etc. They may understand digestion from their own point of reference. They may see gluten as something that 'doesn't agree with you' like they experience with spicy food or similar. They therefore translate their own experience and think 'a little bit won't harm you'. They don't understand gluten is triggering an immune response and our immune systems only need the faintest trace of something they perceive as a threat before they leap into action. 

They also won't have any idea how widespread gluten is, it's in our 'staple' foods which they've been told since childhood are an essential part of a healthy diet. It's in soy sauce, soups, condiments, chocolate bars. Even in some things that dont have gluten ingredients due to cross contamination. Everything in their past experience is telling them that this isn't serious and your lack of a bona fide celiac diagnosis just makes it that much harder to dispell their assumptions.

3 hours ago, Celina said:

I explained to them millions of times what will happen if I ate it but they honestly don't care about it.

You need to stop! They're not listening and the process is just frustrating you both. Tell them once, properly and then don't revisit it again unless they bring it up. Just focus on what you eat, and the healing process. They will see by your actions how seriously you take this and once they realise this isn't a reflection on them or some sort of attention seeking on your part they'll begin to adjust.  Ultimately they're lucky enough not to need to become experts on gluten, you don't have that luxury however. 

 

3 hours ago, Celina said:

Non celiac gluten intolerance is real right?

Oh God yes! 

It's not properly understood yet, there's lots of scientific enquiry needed, much ongoing at the present and there's debate as to whether gluten or other proteins are the primary cause, but it exists, your symptoms are real and you need to treat it seriously.  The better understanding you have of it, the better placed you'll be to tell others:

Here's some fun bedtime reading:

A good overview from a sceptical but fair perspective: Open Original Shared Link

Another overview: Open Original Shared Link

Here's some positive news about a potential new test: Open Original Shared Link

4 hours ago, Celina said:

I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me.

I think you'll find the process of taking control over your food, your health and managing your intolerance empowering. When it comes to your body, you're the world's leading expert. When it comes to your health, you have to take it seriously and when it comes to what you eat, you HAVE TO BE SURE. 

One final point. The rest of your life started the day you went on the diet. You can look forward to improving health and losing symptoms you may not even have been aware of. You've found this out whilst you're still young which is fantastic! I'm jealous! Once you've nailed the diet nothing will stop you.

Best of luck

Matt

[Ennis-TX]

Yeah I went through the family thing also in a shared house for years. I love my family but they could not comprehend it, they are very old fashioned, and have their firm mind set about things. I have posted trauma post about some things I had to deal with. My symptoms are more in my nervous system, brain, and gut not as obvious as a skin rash, They thought I was just going crazy, I did do and thought I was going to die before we figured it out.  But I would suggest buying your own foods, keeping them in your room, and fixing your own meals, Use Freezer Paper on prep surfaces. I also suggest cleaning all things you might touch while preparing foods like fridge handles, knobs, drawers, facet handles. Or opening and turning them on before starting to fix you food then using clean gloves if in a highly contaminated house.

I had my own issues with people believing me over the years also, I recall my time in college and living with my parents and the limited time I had to cook meals and the ease of just going with whats available. I hope the following links will help you track down some foods you can eat and easily prep. Although against the normal whole foods approach the college situation these might help. https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Another idea is setting up a small prep area in your room getting a few new appliances. Mini Fridge, microwave, and a small griddle works, might also see about ricecooker/steamer/crockpot combo they sell on amazon or walmart.  Buy your own GF certified foods, keep them in your room, and have your own set of plates, cups, and utensils. Tell your mother your practicing living on your own if she gets disgruntled >.>

I might suggest getting a new crock pot and doing stews, soups, gruels, etc in bulk and repacking them in reusable NEW Tupperware for your dedicated GF foods, This way you can reheat meals quickly, Vacuum sealers and making homemade steam pouches where you put veggies, seasonings, etc in and make just pull from freezer, poke holes and zapp in the microwave are a easy go to meal fix also. Do not worry about your family focus on your health and hope they will come to accept it when you start doing much better.

 

[TexasJen]

Hi Celina-

I'm sorry it's so rough for you right now. But, I'm glad to know that you have a solution that makes you feel better!  What a relief!

Do you think it would work to sit down with your mom - one on one- during a non-meal prep time?  Not right after she worked hard to make you a dinner?  She probably feels disrespected, working hard to cook and not understanding the situation?  Maybe her emotions are getting the best of her at the end of the day?

Explain that the GI doctor told you that this is a prescription. In fact, get a written order from him/her and show it to your mom. Explain that you are going to try a completely gluten free diet for 2months to see how you feel. Tell her that you are not going to be eating with them - you will take care of your own meals/cooking and that you don't expect her to cook for you. Try to get her to gain agreement that she shouldn't be upset if you don't eat her cooking. Then do you own thing and see how it works!  Maybe if she sees it initially as a trial run, she will be more accepting. Then when you feel awesome in 2 months, you can break the news to her that this is a lifelong thing....

I like the other ideas above as well. Good luck!

[Celina]

3 minutes ago, TexasJen said:

Do you think it would work to sit down with your mom - one on one- during a non-meal prep time?  Not right after she worked hard to make you a dinner?  She probably feels disrespected, working hard to cook and not understanding the situation?  Maybe her emotions are getting the best of her at the end of the day?

Explain that the GI doctor told you that this is a prescription. In fact, get a written order from him/her and show it to your mom. Explain that you are going to try a completely gluten free diet for 2months to see how you feel. Tell her that you are not going to be eating with them - you will take care of your own meals/cooking and that you don't expect her to cook for you. Try to get her to gain agreement that she shouldn't be upset if you don't eat her cooking. Then do you own thing and see how it works!  Maybe if she sees it initially as a trial run, she will be more accepting. Then when you feel awesome in 2 months, you can break the news to her that this is a lifelong thing....

This is a great idea but I have already tried it. She won't even turn to me when talking about it and if I tell her things that she doesn't want to hear (like my symptoms) then she will simply get up and walk away. It took me a doctor diagnosing me to even go gluten free because to her it was "too expensive" even though she would drop gluten in a heartbeat for my brother who is allergic (he doesnt follow the diet). She buys some stuff gluten free for me which I appreciate but she certainly doesn't take me seriously. Maybe she never will. She just thinks I cant have large amounts of it and that i can eat gluten here and there when really I can't. I was having heart palpitations because she fed me it without paying attention. Now I know I should just cook for myself because it was horrible. 

2 hours ago, Ennis_TX said:

Yeah I went through the family thing also in a shared house for years. I love my family but they could not comprehend it, they are very old fashioned, and have their firm mind set about things. I have posted trauma post about some things I had to deal with. My symptoms are more in my nervous system, brain, and gut not as obvious as a skin rash, They thought I was just going crazy, I did do and thought I was going to die before we figured it out.  But I would suggest buying your own foods, keeping them in your room, and fixing your own meals, Use Freezer Paper on prep surfaces. I also suggest cleaning all things you might touch while preparing foods like fridge handles, knobs, drawers, facet handles. Or opening and turning them on before starting to fix you food then using clean gloves if in a highly contaminated house.

Your post really helped me as I did not even think of that stuff. Does gluten stay on things even after washing?? My mom swears I have anxiety when I am really just gluten intolerant. I get the neuro symptoms too. I never even thought about meal prepping and it makes me feel a lot better to know that that is an easier fix to my contamination problem. I will have to try it out

4 hours ago, Jmg said:

They react this way because they don't understand. When the average person thinks of gluten free they think fad diet, first world problems, neuroticism etc. They may understand digestion from their own point of reference. They may see gluten as something that 'doesn't agree with you' like they experience with spicy food or similar. They therefore translate their own experience and think 'a little bit won't harm you'. They don't understand gluten is triggering an immune response and our immune systems only need the faintest trace of something they perceive as a threat before they leap into action. 

 

This is exactly how they react! They act like I can just put up with the symptoms for a few hours and then be on my way when that is soooo not the case. They also don't think i need to be 100% gluten free when I really do. 

 

Thank you for answering guys. I will definitely have to try out meal prepping. It makes me irritated because I really believe that my family will never understand my gluten intolerance. They always say "you just need to chill out Celina". So that is that. I guess perhaps overtime they may understand but I shouldn't feel obligated to eat their cooking because I am their daughter right? 

[Celina]

8 hours ago, GFinDC said:

I don't know if you are aware there is a skin rash associated with celiac disease?  It is an autoimmune condition like celiac disease and is called DH (dermatitis herpetiformis).  DH usually appears on both sides of the body.  It is caused by IgA antibodies in the skin.  If you have DH, they can test for it by taking a small skin biopsy from next to a lesion.  Also, if you have DH, then you have celiac disease, as only people with celiac disease get DH.  There is a section of the forum for DH and it has more info and threads.

I suggest you stop expecting your parents and other people to take care of your diet needs.  The gf diet is hard enough for us to learn and expecting other people to learn it and be aware of all the issues and avoid cross contamination while preparing foods is risky IMHO.  It's much better to control your food yourself and know exactly what you are consuming.  Since you are in a shared household with gluten eaters you will have to be aware of cross contamination and avoid it.  You are the only person in your house who is responsible for keeping your diet gf.  That's just how it has to be.

 

I never expect them to take care of my diet needs whatsoever but from time to time they claim to cook gluten free which now I can't even trust. I told them I would cook for myself to avoid reactions but like I stated above, it normally starts an arguement and me getting attacked for "not being able to chill myself out". The reason I made this post is because I am gonna be living with them until I graduate and they are not fond of the idea that I cannot eat their cooking, they get mad, and all that. I don't expect them to baby me because of it. 

Also yes I am aware of the rash. I had eczema that was identical on both of the bends of my arms. Nothing cleared it up except going gluten free. Also on both of my arms I had a rash that was like dozens of little insect bites and they only go away with gluten free. As soon as I eat gluten the insect bite rash is back within 20 min. My doctor said you can get the rash by just being gluten intolerant, and my celiac test is negative. Should I be concerned? 

I go to derm this week for my rash on my scalp  but it all cleared up because I have been gluten free. Is it still worth talking to them about?

[GFinDC]

36 minutes ago, Celina said:

I never expect them to take care of my diet needs whatsoever but from time to time they claim to cook gluten free which now I can't even trust. I told them I would cook for myself to avoid reactions but like I stated above, it normally starts an arguement and me getting attacked for "not being able to chill myself out". The reason I made this post is because I am gonna be living with them until I graduate and they are not fond of the idea that I cannot eat their cooking, they get mad, and all that. I don't expect them to baby me because of it. 

Also yes I am aware of the rash. I had eczema that was identical on both of the bends of my arms. Nothing cleared it up except going gluten free. Also on both of my arms I had a rash that was like dozens of little insect bites and they only go away with gluten free. As soon as I eat gluten the insect bite rash is back within 20 min. My doctor said you can get the rash by just being gluten intolerant, and my celiac test is negative. Should I be concerned? 

I go to derm this week for my rash on my scalp  but it all cleared up because I have been gluten free. Is it still worth talking to them about?

Hi Celina,

Yes, you should talk to a doctor about the rash.  It is  a symptom and should be explored. But it would help if you can talk to a doctor who knows what the h.e. double toothpicks celiac disease and DH are too.  Can you find a celiac support group in your area to talk too?  They might have ideas on doctors who can help with your diagnosis.

DH, if that whats you have, can become very itchy and be hard to get rid of, even after going GF.  The antibodies deposit in the skin and cause issues.  Sometimes little blisters will form.  You should find a doctor who is experienced to check your rash, not just any dermatologist.  It's worth it to drive to another city if needed to find a person who is experienced and recognizes DH.  Being gf for more than 2 weeks is enough to make the celiac testing useless.  The antibodies levels in the blood stream decline and the testing is not relevant anymore.

People with DH sometimes don't test well on the blood antibodies.  Maybe because the IgA antibodies are concentrated in the skin instead of floating around the bloodstream aimlessly.  So the skin biopsy is used to find the antibodies instead.

I can't tell you the best way to deal with your parents.  Honesty is always helpful though, and straightforward talk.  But it's hard to communicate with someone who has no clue what you are talking about.  So maybe if you print out some information for them to read it will help get them familiar with the issues.

Going gf is a major diet change for many people, and has many affects on our lives.  It can take some adjustment on our part and our friends/loved ones too.

Since celiac disease has a genetic component one or both of your parents would have passed the gene(s) to you.  The celiac genes are associated with a range of autoimmune conditions and families with the celiac genes may have AI conditions of other kinds.  You could get the gene testing done for yourself.  If you have the gene(s), then your siblings might have them also.

We are having a somewhat similar conversation about those dang gluten eaters in this thread.

 

 

[Pocah]

Do what I did. Lie. Lol.

I passed the initial blood test. I was at a much more advanced stage than you, in that I was suffering very bad abdominal pains and had already had several intestinal ulcers - to name just a few of the symptoms. On the suggestion of one doctor ( who, rightly or wrongly said that the test was somewhat unreliable ) I gave up eating gluten and within 2 weeks most of my major symptoms had gone and within a few months many more had disappeared. But because I had passed the blood test my immediate family simply didn't believe me,  even though I was 100% sure that gluten was to blame ( they still didn't believe it even though my father had suffered the same problems for many years, undiagnosed, before his death. ). Anyway, so I told them the test was unreliable and I had to take it again, and this time I failed the test. It shut them up. Now they accept it ( or at least they don't hassle me any more ).

[Peaceflower]

On 06/02/2017 at 6:33 AM, Celina said:

Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing?

Hi Celina,

It took my family ten years to take it seriously and it is because I did.  I realised that I could say I only eat food I prepare myself.  When I knew my mum took it seriously I would eat food she cooked for me.  I could have offended her recently when she made me a cup of tea but took out the tea bag after eating a sandwich, but she and I have a closer relationship because I am honest with her.  I said I was really sorry but I can't accept tea from anyone who doesn't wash their hands first after eating gluten food.  I said I don't even accept a cup of tea from my husband without him washing his hands first.  I had realised that I had started to eat food people prepared me, just to please them.  I'd then go home and suffer for four or five days unbearably.  My mum began to realise that if I was going to eat her food she would have to take it seriously, because I explained to her what I considered 'safe'.  She made me a big chocolate cake for my birthday once and assured me that before making it, she and Dad had cleaned the kitchen and checked every utensil over before baking.  They were laughing about how careful they had been and I believed them because they were finally taking me seriously.  They even remove the toaster from the kitchen now when I go and visit because I plucked up the courage to tell them I react to airborne cooking or baking smells.  You feel like a hypochondriac when you know you are not, especially without a clinical diagnosis.  You don't need one to know what your symptoms are and what you need to avoid.  I used to get migraine and other symptoms whenever I visited and still struggle to say that I need to avoid being in the kitchen.  The thing about parents is that they feel guilt.  They want to carry on looking after you and being hospitable even when you grow up and have kids of your own.  They want you to trust them too.  The cake my mum and dad made that day was delicious.  I went home with migraine and hid my head under a pillow in a darkened room and said nothing.  My mum called later to see how I was and my husband told her I was lying in a dark room with migraine and asked why she was asking.  She said that after all the effort they went to she realised she had used baking powder with wheat flour in it.  I was so excited, because I knew it was not cross-contamination and it was like a placebo effect experiment because my mum and I both knew I believed it was gluten free.  From that day, even though she believed me before, this was like a breakthrough for me and I was happy with my symptoms and told my mum I was so happy to know I hadn't imagined it, knowing that she believed me.

If your mum is no experiencing your symptoms, she is not going to be as careful as you.  When you work out how to look after yourself, you can tell other people how to.  Only you know how bad you feel when you're not careful.  I always take a mug and teabag to friends' now and they don't bat an eyelid and I can relax knowing the tea is 'safe'.