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What do I say?

chocchip

By chocchip
in Coping with Celiac Disease

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chocchip Newbie
chocchip
Posted

Hi everyone!  I am a new member but I am not new to being gluten-free.  I have been gluten-free for almost 8 years now and I have a teenager that has been gluten-free for a year.  Like many of you, it was bumpy at the beginning for me -- especially back then when gluten-free products, flours, etc. were literally non existent.  I literally ate paleo...plus cutting out eggs, too.  That was hard. 

To clarify, both my daughter and I are gluten intolerant because of hypothyroidism (I have Hashimotos.)

I do not cheat...I do not have severe immediate issues --but over time it would catch up with me and I would feel half alive.

But I am very frustrated at the moment.  Last night we went out to dinner as a family with some extended family.  The restaurant we went to is not really gluten-free but they have been kind enough to amend some of their dishes for my daughter and I.  My daughter still gets very upset when we go to this restaurant because she is not allowed to eat her past favorite dishes.  She takes it out on me....like it is my fault.  We try not to visit this restaurant often but my husband likes it so much and same with our other daughter -- they are not gluten-free.

My teenager asked me if she could have some of a non gluten-free dish...and of course she asked in a "not very nice" tone.  I replied: your life, your body.

Truthfully I am worn out from this kind of conversation with her.  I did not tell her to go gluten-free; our naturopath did.  

So, my daughter helped herself to the non gluten-free dish.  And of course my MIL and her sister jumped at the opportunity to get my daughter to eat more...even though my daughter only took a little.

I really wanted to cry.  It was insulting the way my MIL seized the opportunity to choose not to show support for her granddaughter or even me.  And of course my husband was no help even though he has read lots about hypothyroidism and duh, he lives with us.  It was just shocking behavior.

Even my own reaction makes me upset because I just sat there and said nothing.  I said nothing to my MIL and her sister when now I feel that I should have defended AGAIN why my daughter and I are gluten-free.  But I guess I am giving up because uneducated people just cannot learn.  And empathy is not a part of their vocabulary either.

Being gluten-free has been challenging.  Of course I miss eating things that I used to eat.  Among the autoimmune issues I personally have to deal with, it would be nice to at least have some support when it comes to eating gluten-free.

If you were me, what would you have said?  If it happens again, what should I say?  Because I am tried of these games.  No gluten means NO GLUTEN!

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GFinDC Veteran
GFinDC
Posted

Hi chocchip,

Welcome to the forum! :)

I guess I don't understand being gluten intolerant because of hypothyroidisim?  There is a an association between higher rates of Hashimoto's Thyroiditis and celiac disease.  But hypothyroidism doesn't cause gluten intolerance to my knowledge.

Regardless, if your daughter is gluten intolerant she probably has some symptoms that go along with it.  If she develops symptoms from cheating that should make a change in her attitude towards eating gluten in theory.  We all learn at our own rates, and it is hard to make people learn and understand if they don't want to.  She may have to graduate from the school of hard knocks.  It's generally a very effective teacher IMHO.  I don't have kids but I can understand that it is frustrating when they don't listen.

kareng Grand Master
kareng
Posted

Sorry, but I am going to say that I don't see why she is gluten-free.  Just because you are?  Or someone  told her to be?      I can see why the family was encouraging her.  She doesn't have a medical diagnosis from a doctor , like Celiac or Hashis, that probably should be gluten-free.  Even a dx like Hashis can probably cheat a little or take a burger off a bun.  I also wonder, if your husband was behind her being gluten-free, why would he insist on this restaurant when he knows it upsets her?   My husband wouldn't do that to me.   

 

Wanted to add- if she isn't buying into a need for gluten-free, wonder what she is eating when you aren't around?

cyclinglady Grand Master
cyclinglady
Posted

I can see your dilemma, but can you really convince your daughter to go gluten free without any proof?  

I am all for being gluten free.  I have celiac disease and Hashimoto's.  I can say that my thyroid is no longer enlarged and the nodules that  I had are gone.  Was it the diet?  Was it reduced inflammation?  Who knows?  I am curious.  Have your thyroid antibodies gone down as a result of your being gluten free for a year?  Perhaps, this would help your daughter adhere to the diet if she saw proof.  What about other symptoms?  

I have diabetes too.  It's hard to maintain a low carb diet that does not affect my blood sugar and be gluten free to boot!   But I have lab tests to help me stay the course (celiac antibodies for the gluten-free diet and a meter to test my blood sugar). 

My niece was just diagnosed with Crohn's.  I would love for her to try a gluten-free diet as well.  But, unfortunately, there are not enough studies to demonstrate that gluten-free is good for all AI issues.  

Because Hashi's is commonly linked to celiac disease (about 10% or so), did your doctor/ND rule out celiac disease (testing) before advising you to go gluten free?  

I hope you can work things out for your daughter and your family. 

 

 

Ennis-TX Grand Master
Ennis-TX
Posted

I have a deep rooted understanding of living with others and that "Oh a little is alright" mind set or "It won't kill you it's just bread". Most people do not understand these things unless they have had to deal with symptoms or it can be put in a perspective they can grasp via phrasing it with something else. One friend I asked how he would like it if I dusted his food with poison ivy then took it back off would he be fine, when he is allergic to it. The perspective chain brought his mindset to understanding my issues with cross contamination.

As for your daughter I imagine she would need some kind of hard proof like really bad reactions, or symptoms to convince her to stop all together, along medical testing results on paper to help set it in her mind.

To be honest I get mad cravings for a few things I am allergic to and used to think "Maybe I grew out of it, or it was just a fluke" then try a bit and get violently ill. I now make foods that taste just like those things that are safe and eat on occasion.

chocchip Newbie
chocchip
Posted
  • Author

Thanks for the replies...Ennis_TX, you seem to understand my dilemma and I like your analogy though I am sure other family members would give me the eye roll if I used it.  I guess they want to see us writhing in pain on the floor in order to take us seriously.  :huh:

However, I am sadly confused because I am getting a vibe here that says that being gluten intolerant without an "official celiac DX" is something not to be taken seriously?  Regardless of why we are gluten-free, the point was to seek support from others who have been there.  

I encourage you to read this article.

Open Original Shared Link

That being said, both my daughter and I were suffering from anemia and underwent extensive blood work.  We both take thyroid replacement and are under control for the most part.  Hashimotos is a wild turkey chase. 

In my case, I also have alopecia aerata...so if that isn't an autoimmune cluster, then color me confused.  So, no, we have not done official celiac testing -- the results and symptoms are enough.  

Thanks.

cyclinglady Grand Master
cyclinglady
Posted

I don't think we were not being compassionate -- just being realists.  Without a diagnosis, you are going to get some eye-rolling. Even your hubby is not very supportive.  I completely get it.  My hubby went gluten-free per the poor advice of his GP (MD) and my allergist.  It worked though.   Why would you  maintain a strict gluten-free diet for 15 years if it was not working?  Still, he would say that I get way more support from family, friends and medical with my celiac disease diagnosis.  

I am sorry that your  ND did not test you for celiac disease.  I think after 8 years, like my hubby, you are not interested in a gluten challenge to obtain a formal diagnosis, but your daughter just might.  It certainly sounds like you actually have celiac disease (anemia and intestinal issues, along with Hashi's).   celiac disease is genetic.  You can have it and be symptom free.  Your daughter might need a diagnosis for university.  

We have a 15 year old who does not have celiac disease, but is showing signs of Raynald's Syndrome.  AI disorders run strongly on both sides of the family.  I test her every few years for celiac disease.  

 

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GFinDC Veteran
GFinDC
Posted

Hi chocchip,

You are certainly welcome to eat gluten-free if you want to.  There are some members of the forum who didn't pass the celiac disease testing with flying colors and a firm, bullet proof diagnosis.  Like me for instance!  ( I hope they don't run me out of here now... ). :(

I read the article you linked, but I don't accept everything Chris Kesser says about gluten.  For one thing he is pushing stool testing, which is not an accepted medical test for celiac disease or any autoimmune food related reaction.  His article has several major holes in it IMHO.

But, if you feel better eating gluten-free , then have at it.  We don't all pass the celiac disease tests that are available now.  The current tests just aren't 100% accurate at the present.  They all have a small amount of possible error.  NCGS is an area that doesn't even have any good tests at the moment.  So there is plenty of ambiguity in the gluten intolerance field right now.  But if your body tells you not to eat gluten by how it reacts, that is always a good thing to pay attention to.

emma6 Enthusiast
emma6
Posted

Probably not the answer you want to hear but i can understand where your daughter is coming from.
if I went gluten free for those reasons i would most likely cheat as well. i mean maybe she has researched it herself and is questioning if its really necessary for her to be on such a restrictive diet or has tried eating gluten when you're not around with no bad reaction. it might be worth asking if she would be interested in doing a gluten challenge and being tested for celiac disease so you could feel better knowing that if she does eat gluten its not causing any serious damage.

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