Just looking to talk

[Bananasbananas]

hello! Earlier this month I got my blood work back and it was unambiguously positive. I have my endoscopy next month,so I’m still eating gluten. I feel like this has both upended my life and has been so clarifying for me, but my issue is that none of my friends or family wants to talk to me about any of it. I’m really excited to finally be finding a root cause for so many of my quirks, like being so small as a kid I asked my parents if I was a dwarf, or my lifelong struggle with anemia. I tried to talk to my family recently and they basically just laughed at me. This is the first time I’ve gotten a major diagnosis like this and I just feel like I have so much to say and no one will listen. 

[RMJ]

We’ll listen!  I think sometimes families don’t believe the celiac diagnosis and thnk it is just a fad.  I once asked a doctor if a drug would affect my intestines because I had celiac.  His response was that I probably didn’t have it!  I was able to respond that I had just had a positive biopsy a few weeks before. Sometimes family members are afraid they have it too but won’t be tested because they wouldn’t be willing to give up bread.  

I hope your biopsy gives you a definitive diagnosis and you can start healing soon!  You’ll get lots of support here.

[cyclinglady]

Welcome to the forum.  It is so nice to be able to hang out on this forum and communicate with folks who have been walking in your shoes.  Keep eating gluten until your endoscopy.  Take this time to bid a find farewell to some of your gluten-containing favorite foods, but know that you can convert any recipe. 

I was anemic too and that resolved within months.  Check out our Newbie 101 thread pinned at the top of the Coping section of the forum.  It has some nice tips.  

 

[Ennis-TX]

I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away like I am a bloody leper. My mother and father still provide for me but tend to stay their distance. >.< right before my diagnosis I had a symptom from my disease that caused gluten ataxia where it attacked my brain....it made me tad mad crazy like Mr. Hyde snap and punch holes in walls......SO  I burned a bunch a bridges before that stopped.....

ANYWAY. welcome to the forum, your little crazy family away from you blood family where you can talk about all your health quirks without judgement and get a TON of help. I am the crazy 28 year old uncle like Sheldon from big bang theory with a obsession with baking, supplements, body building, and can help you find just about any kind of food replacement in the USA.

[squirmingitch]

Welcome Bananas! We will talk to you! I think family often doesn't want to talk about it or believe it because 1) they never heard of it before  2) can't believe bread could make you sick  - I mean everybody eats bread right?  3) it's the last thing they want to hear because they realize they could also have it & you wouldn't believe the # of people in the world who can not conceive of taking bread or flour out of their lives so they stick their heads in the sand & pretend it doesn't exist.

 

[Bananasbananas]

4 hours ago, RMJ said:

We’ll listen!  I think sometimes families don’t believe the celiac diagnosis and thnk it is just a fad.  I once asked a doctor if a drug would affect my intestines because I had celiac.  His response was that I probably didn’t have it!  I was able to respond that I had just had a positive biopsy a few weeks before. Sometimes family members are afraid they have it too but won’t be tested because they wouldn’t be willing to give up bread.  

I hope your biopsy gives you a definitive diagnosis and you can start healing soon!  You’ll get lots of support here.

I think I’ve been a little overly emotional lately, but your reply is really nice to read! I do think once the biopsy is over and I start making some real changes Things might set in a bit more and it all just becomes more.. normal? thanks for the reply!

[squirmingitch]

27 minutes ago, Bananasbananas said:

I think I’ve been a little overly emotional lately, but your reply is really nice to read! I do think once the biopsy is over and I start making some real changes Things might set in a bit more and it all just becomes more.. normal? thanks for the reply!

You're so welcome! 

Overly emotional. Um, yeah, actually lots of us with celiac disease can be overly emotional when we've been glutened. It's a feature! Woo hoo! Not to mention the fact that this is all very new to you & it does tend to make you feel like your life has just been turned upside down.

Realize too that your friends & family will need time to digest (haha) this whole celiac thing as well. 

You're going to feel a little shaky & unsure of yourself. That's normal. This is a big deal. You will undoubtably end up going through a grieving process. I think all of us did. I recall I was all gung ho right from the get-go & then after things had time to sink in a little bit, I was scared, unsure, thrown off balance. A sense of humor is worth it's weight in gold in dealing with this. Also of great value is determination & persistence. You'll get there! 

 

[Bananasbananas]

1 hour ago, Ennis_TX said:

I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away like I am a bloody leper. My mother and father still provide for me but tend to stay their distance. >.< right before my diagnosis I had a symptom from my disease that caused gluten ataxia where it attacked my brain....it made me tad mad crazy like Mr. Hyde snap and punch holes in walls......SO  I burned a bunch a bridges before that stopped.....

ANYWAY. welcome to the forum, your little crazy family away from you blood family where you can talk about all your health quirks without judgement and get a TON of help. I am the crazy 28 year old uncle like Sheldon from big bang theory with a obsession with baking, supplements, body building, and can help you find just about any kind of food replacement in the USA.

Im so sorry to hear about your family’s reaction. I think if I approach them differently next time I get a bit more understanding, but it is so nice to hear you’ve found a bit of family here  

i couldn’t imagine dealing with ataxia, is gluten ataxia reversible? I’ve found the most embarrassing symptom (at least I hope it’s related) is my loss for words. I think it’s mostly brain fog. I have a very academic job and find myself saying “excuse my layman’s terms, but..” pretty often.

I’m actually 28 also and I’ve been told my grasp on sarcasm is fairly comparable to sheldon’s  nice to “meet” you!

[Bananasbananas]

3 hours ago, cyclinglady said:

Welcome to the forum.  It is so nice to be able to hang out on this forum and communicate with folks who have been walking in your shoes.  Keep eating gluten until your endoscopy.  Take this time to bid a find farewell to some of your gluten-containing favorite foods, but know that you can convert any recipe. 

I was anemic too and that resolved within months.  Check out our Newbie 101 thread pinned at the top of the Coping section of the forum.  It has some nice tips.  

 

Thanks for redirecting me! Right after I posted I realized I might not be in the right forum.

Until having blood work done this past year I thought I had outgrown the anemia, only to find out iron wasn’t my only deficiency. I am a runner though, so I am looking forward to hopefully seeing some changes with that once my nutrition improves.

thanks so much for the reply!

[Bananasbananas]

2 hours ago, squirmingitch said:

Welcome Bananas! We will talk to you! I think family often doesn't want to talk about it or believe it because 1) they never heard of it before  2) can't believe bread could make you sick  - I mean everybody eats bread right?  3) it's the last thing they want to hear because they realize they could also have it & you wouldn't believe the # of people in the world who can not conceive of taking bread or flour out of their lives so they stick their heads in the sand & pretend it doesn't exist.

 

I’m still wrapping my head around bread making me sick! I’ve always been a carb girl- although rice is my favorite, and I never liked pizza or sandwiches until the past few years. I guess it kind of explains why I’m such a bottomless pit haha.   

 

[RMJ]

Please let us know the results of your endoscopy/biopsy when available!

[Awol cast iron stomach]

2 hours ago, squirmingitch said:

Overly emotional. Um, yeah, actually lots of us with celiac disease can be overly emotional when we've been glutened.

Yep I second this  I was always told I was over emotional and melodramatic growing up with this undiagnosed disease.

I also get brain fog and word retrieval and short term memory goes out the window.

I also get ataxia symptoms too so as others mentioned we are a family here of shared symptoms.

good luck on the rest of the challenge and may your endoscope go well.

as for family I have quite a few nurses in mine and people with allergies in my spouses' but celiac often brings it to a level most can't truly wrap their heads around like those of us on the forums.

in time your family will adjust but often they don't know what to say as most people can not understand the degree of damage a food can do to us on all organ levels & systems.

best wishes 

 

[Jmg]

18 hours ago, Bananasbananas said:

hello! Earlier this month I got my blood work back and it was unambiguously positive. I have my endoscopy next month,so I’m still eating gluten. I feel like this has both upended my life and has been so clarifying for me, but my issue is that none of my friends or family wants to talk to me about any of it. I’m really excited to finally be finding a root cause for so many of my quirks, like being so small as a kid I asked my parents if I was a dwarf, or my lifelong struggle with anemia. I tried to talk to my family recently and they basically just laughed at me. This is the first time I’ve gotten a major diagnosis like this and I just feel like I have so much to say and no one will listen. 

Welcome

You've found a good place, lot's of people who understand just how big a discovery this is for you. When I realised I had a problem with gluten it felt like the climax of an Indiana Jones movie where the mystery is finally solved, or perhaps the moment you solve the biggest jigsaw puzzle of your life...

It's very difficult to communicate that to people who havent experienced it. Frankly the image of gluten free eaters isn't great, a lot of people are very sceptical of them and they don't want to hear about how the food they eat without issue is harmful to others:

But that's not the case here! Take some time to read through some of the accounts on here, it helped me to put my own experience into perspective. 

Matt

[Bananasbananas]

On 12/29/2017 at 10:16 PM, RMJ said:

Please let us know the results of your endoscopy/biopsy when available!

I definitely will! I had a positive ema iga (among other out of range antibodies) so unless my blood was swapped with someone else’s, i think the diagnosis is fairly eminent, but I do see the utility in the biopsy. 

[Bananasbananas]

13 hours ago, Jmg said:

Welcome

You've found a good place, lot's of people who understand just how big a discovery this is for you. When I realised I had a problem with gluten it felt like the climax of an Indiana Jones movie where the mystery is finally solved, or perhaps the moment you solve the biggest jigsaw puzzle of your life...

It's very difficult to communicate that to people who havent experienced it. Frankly the image of gluten free eaters isn't great, a lot of people are very sceptical of them and they don't want to hear about how the food they eat without issue is harmful to others:

Open Original Shared Link

But that's not the case here! Take some time to read through some of the accounts on here, it helped me to put my own experience into perspective. 

Matt

Hi Matt! I think the reputation of being ~gluten free~ is what I’m most worried about. Other than beer I’m not super attached to gluten laden foods, so the diet doesn’t scare me as much , but I’m not always the best at advocating for myself. Hoping overall this experience will be positive and maybe I’ll improve on that skill set now that it’s more of a necessity. 

[Jmg]

4 hours ago, Bananasbananas said:

Hi Matt! I think the reputation of being ~gluten free~ is what I’m most worried about. Other than beer I’m not super attached to gluten laden foods, so the diet doesn’t scare me as much , but I’m not always the best at advocating for myself. Hoping overall this experience will be positive and maybe I’ll improve on that skill set now that it’s more of a necessity. 

You have a great attitude towards this and that's going to help you so much. 

You will find yourself having to advocate for yourself, maybe make some difficult decisions sometimes that displease other people. That's not such a bad thing despite the fact that many of us are raised to be people pleasers. Sometimes you need to stand up for yourself and with this condition you really do not have an alternative. So treat it as character building as well as self preservation!

You will have to decide how to broach the subject with friends and new acquaintances. Ny advice would be to only mention it if it comes up naturally, say if you refuse some snacks being handed around and the host tries to force them on you. If you don't initiate the conversation and don't do more than answer questions you will lessen the chance of being thought of as that gluten guy/girl (Although its also good practice in not giving a **** what other people think )

Some of this you'll work out over time. Some of it is really simple. Preparing in advance is a big help. Having some safe snacks with you, in the car, in your bag/coat etc. Knowing what safe products are readily available to you in any store. Eating before you go out. Eating foods that keep you full for longer so you don't suffer hunger pangs.  A party with delicious smelling food you can't eat is easier dealt with on a full stomach!

That positive attitude will see you through. All the best!

Matt

 

 

[vgoebel]

Im in the middle of being diagnosed.  My blood test was positive 2 months ago.  I had a endoscopy a week ago and am waiting for results on that.  So for the last 2 months I have been eating gluten and reading about this new possible diagnosis. So far, in my life, the hardest thing has been trying to get those around me to understand how dangerous gluten will be for me. My dad said surely a piece of bread won't kill you.  He isn't being harsh. Just a lack of knowledge.  I have spent a lot of time just trying to understand it myself.  Hang in there and ask around to see if there is someone around that you could speak to who is already dealing with it. I am a prayerful person.  My first suggestion would be to pray and ask God to bring someone who understands into your life. If that is not your thing, look into support groups or utelize this page like crazy.  Good luck to you.