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Tips For Going Gluten Free?


taynichaf

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taynichaf Contributor

My blood tests were negative for celiac, but I have an endoscopy this friday(FINALLY), and starting then I'm going to be eating gluten free! Celiac or not, I know i have a gluten problem...

 

So does anyone have any advise for me?? I'm an 18 year old girl living with my parents and starting college very soon :)

 

Also, its very difficult living with my mom when she doesnt support me with this... She seems to believe that none of my problems are gluten related and that im a hypochondirac... I have been seeing a therapist for my depression/anxiety and she is so EXCITED for me to stop eating gluten again! She is like urging me to do it. She notices a HUGE different, and it just kinda hurts that my mom doesnt..


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bartfull Rising Star

Have you read the "Newbie 101" thread?

kareng Grand Master

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

Maybe your mom could go to a therapy session with you?

taynichaf Contributor

Didnt know about that thread, thanks! And thats a good idea, I never thought of it but I think that would be very beneficial! Thanks again :)

1desperateladysaved Proficient

My blood tests were negative for celiac, but I have an endoscopy this friday(FINALLY), and starting then I'm going to be eating gluten free! Celiac or not, I know i have a gluten problem...

 

So does anyone have any advise for me?? I'm an 18 year old girl living with my parents and starting college very soon :)

 

Also, its very difficult living with my mom when she doesnt support me with this... She seems to believe that none of my problems are gluten related and that im a hypochondirac... I have been seeing a therapist for my depression/anxiety and she is so EXCITED for me to stop eating gluten again! She is like urging me to do it. She notices a HUGE different, and it just kinda hurts that my mom doesnt..

 

 

You have quite a challenge with an unsupportive mother.  I hope things will get better.  Can you understand how difficult some of the symptoms are to see? (brain fog?  fatigue?)  My mother use to tell me that, "I can't tell how you feel."  It is when people can see you feel different, by your behavior, that the light begins to dawn in their heads.  First you need to avoid gluten and get better.  That could be difficult.  Are you staying at home during college?  I hope you will be able to set up your own kitchen stuff somehow.  Many of us start the journey with not many others on board completely.  You have the forum to ask questions and it will help.

 

I can feel about having mother troubles regarding diet. My mother almost won't talk to me. I don't live at her house though.  She hasn't failed to notice I can't eat the food she makes.   I also am a mother struggling to get my young adult children to see they have gluten trouble too!.  These conflicts are a hard part of life....For sure, when one is young, or older these are a hard, but normal part of life.  On the forum we see these struggles all the time.  It was one thing that impressed me at first.  I and my family were struggling with the same problems as others on the forum.

 

I am hoping that you will have enough help, but being 18 you are ready to fly!  You will be gluten free soon.  I want you to be helped by the diet..

 

Diana

 

taynichaf Contributor

You have quite a challenge with an unsupportive mother.  I hope things will get better.  Can you understand how difficult some of the symptoms are to see? (brain fog?  fatigue?)  My mother use to tell me that, "I can't tell how you feel."  It is when people can see you feel different, by your behavior, that the light begins to dawn in their heads.  First you need to avoid gluten and get better.  That could be difficult.  Are you staying at home during college?  I hope you will be able to set up your own kitchen stuff somehow.  Many of us start the journey with not many others on board completely.  You have the forum to ask questions and it will help.

 

I can feel about having mother troubles regarding diet. My mother almost won't talk to me. I don't live at her house though.  She hasn't failed to notice I can't eat the food she makes.   I also am a mother struggling to get my young adult children to see they have gluten trouble too!.  These conflicts are a hard part of life....For sure, when one is young, or older these are a hard, but normal part of life.  On the forum we see these struggles all the time.  It was one thing that impressed me at first.  I and my family were struggling with the same problems as others on the forum.

 

I am hoping that you will have enough help, but being 18 you are ready to fly!  You will be gluten free soon.  I want you to be helped by the diet..

 

Diana

 

For some reason this almost made me cry... gluten also makes me overly emotional, lol. But I will be staying at home for college, so thats somewhat good... And atleast my dad supports me with this, although I do not live with him anymore :( Good to know he understands at least. And I know, I hope my mom will be able to see the changes that happen in me but shes stubborn, and i dont think she ever will.... She says a lot of things that make me believe that she just really doesnt want me to have some sort of gluten intolerance.. like shes jealous I found this out so soon i guess?? I might add, she became interested in gluten intolerances and was reading a book i bought on it.. She decided to go gluten free but it only lasted a week or two... she doesnt have the self control with food that i do! I really wish she would stop eating gluten though, as she has many symptoms too, but they are mainly neurological...

 

Thank youuuuu! I am so excited to finally start living, and to find the person that I used to be! :)

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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