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Newly Diagnosed- Dealing With Rude Comments
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Hey everyone,

ugg...I am so frustrated. After 4 years of misdaignosed health problems, was diagnosed with celiac about 2 weeks ago. It has been a major adjustment in which I am still learning, but I can already tell a difference in my health. I have read as much as I possibly can to learn about the disease. My family is extremely unsupportive and it's getting the better of me. They have just slipped in little rude comments such as :

"I don't think it's that serious, a little gluten won't hurt you"....

 "at least you don't have crohn's disease, that would be really bad"

"you are being a hypocondraic...you really can't feel that bad...you are young and healthy! It must all be in your head"

"You will grow out of it, this won't be forever. Maybe you should try to eat a little bit here and there to get your body used to it. Kind of like allergy shots!"

"Why don't you want to go to steak and shake with me....I am sure you can eat something!"

When I politely turned down the casserole that my aunt made last week, my uncle roled his eyes and just got that annoyed look on his face.

 

I am getting so frustrated. I try to educate them as much as possible about the disease (they know NOTHING about it) but it seems like they don't care. They don't listen. In fact, a couple days ago I said something about celiac disease and my dad looked at me and said "What is celiac disease?" sheesh....it is the disease that I have dad....the one that I have told you about 20 times now....

 I try to educate them as much as possible  but they don't listen. It is extremely discouraging. I try to tell them that gluten doesn't just give me a stomach ache...it literally damages my body and could cause serious health problems later in life if i don't avoid it 100 percent. But they just tune me out. My husband and mom are supportive and willing to learn, but no one else is. I am so thankful for them. But it still is not easy when practically everyone else in your family treats you like this.

 

Have any of yall dealt with this? How did you deal with it?

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My family is supoprtive thankfully, but I've been getting some comments at work.

 

I will say this though - my mom was like that when I was diagnosed with hypo thyroid disease about 16 years ago. She was telling me it was all in my head. I just had to ignore it and keep moving.

Bottom line is, it's YOUR health - so do whatever YOU have to do to stay healthy. Eventually they should come around and if they don't, it's THEIR problem.

 

I'm sorry I can't offer you anything more helpful.

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Hi eblue and welcome to the family :) !

 

I will never understand why people question a diagnosis of celiac disease. it is a potentially life-threatening autoimmune disease and I wonder if they would have questioned a DX of MS or cancer,  too?

 

The way you stand firm and present it to others will be key in them taking you seriously.

 

Maybe this article by Danna Korn will offer some thoughts. 

 

 

http://www.celiac.com/articles/22070/1/Talking-to-Others-About-the-Gluten-Free-Diet-by-Danna-Korn/Page1.html

 

Your family should be made aware of the fact that this is a hereditary disease and so, enlightening them may prove helpful.

 

I wrote my large extended family a letter after my DX. I am sure some of them ignored it and I am sure some of them said

"Well, that's not me; so...." but mostly, the people who saw my horrible decline in health for so many years knew it was real

and have never questioned my dietary needs. 

 

Just focus on getting well and learning all you can about celiac disease right now.

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Hey everyone,

ugg...I am so frustrated. After 4 years of misdaignosed health problems, was diagnosed with celiac about 2 weeks ago. It has been a major adjustment in which I am still learning, but I can already tell a difference in my health. I have read as much as I possibly can to learn about the disease. My family is extremely unsupportive and it's getting the better of me. They have just slipped in little rude comments such as :

"I don't think it's that serious, a little gluten won't hurt you"....

 "at least you don't have crohn's disease, that would be really bad"

"you are being a hypocondraic...you really can't feel that bad...you are young and healthy! It must all be in your head"

"You will grow out of it, this won't be forever. Maybe you should try to eat a little bit here and there to get your body used to it. Kind of like allergy shots!"

"Why don't you want to go to steak and shake with me....I am sure you can eat something!"

When I politely turned down the casserole that my aunt made last week, my uncle roled his eyes and just got that annoyed look on his face.

 

I am getting so frustrated. I try to educate them as much as possible about the disease (they know NOTHING about it) but it seems like they don't care. They don't listen. In fact, a couple days ago I said something about celiac disease and my dad looked at me and said "What is celiac disease?" sheesh....it is the disease that I have dad....the one that I have told you about 20 times now....

 I try to educate them as much as possible  but they don't listen. It is extremely discouraging. I try to tell them that gluten doesn't just give me a stomach ache...it literally damages my body and could cause serious health problems later in life if i don't avoid it 100 percent. But they just tune me out. My husband and mom are supportive and willing to learn, but no one else is. I am so thankful for them. But it still is not easy when practically everyone else in your family treats you like this.

 

Have any of yall dealt with this? How did you deal with it?

I just shared with my family what I have been going through.  By my family I mean my sister and father.  We already have a strained relationship, I can just imagine the eye rolling they are doing as they read the lengthy mail I sent them.  No we do not even talk anymore.  So, yes, I can get it.  I even worry about restaurants and friends treating me that way.  I make such strict requests if we go out even to a gluten-free restaurant, that I expect eye rolling and am so happy when it doesn't happen.  My hubby says we are paying for this, they better do it your way.  As for friends are they really your friends if they do not want to listen and understand?  Family, I cannot help you with, my husbands family is more supportive than mine, very understanding.  Good luck, I hope it gets better.

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i had been very sick for a very long time, so the people who know me take it seriously.  one of my friends who was my 'recipe/foodie buddy' from church made me stuffed grape leaves when i was first diagnosed and told me there was no gluten in it.  when i opened the container it had lemon sauce on it.  I ALMOST DIDN'T CALL HER and ask her what was in the sauce, not wanting to be picky, but sooooo glad i did "oh, there *is* a little flour in the sauce, i forgot!  but it's only, like, a tablespoon"  - i think she rolls her eyes at me but i don't care lolz - if i try to explain anything to her, she sort of shuts off or changes the subject.  she invited my husband and i to a dinner party, haha, i just drank (my own) beer, oops, she forgot about my celiac .  that's ok, i already ate :)  

 

roll with it, baby, that's what i do.  good luck!

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  So sorry to hear that this has happened to you. I find that happens to me very often. My family is supportive, but strangers are another matter. My father has Celiac too (I got it from him) and he won't admit to strangers he has it because he's tired of the nastiness. What I don't get is what makes people think they can be nasty to someone sick just because they are completely uneducated and ignorant of a disease? Just don't get that.

   For me, I try to nip it in the bud...if I see eye rolling I say, "Excuse me, I see that I eye roll and that is rude and unacceptable.How dare you?" Being a teacher, I correct people. I need to take it head on and put them in their place because they are completely wrong to behave that way. Even if they feel that way, I don't care, they are still obligated to be polite to me if they don't want me to give them a correction or speak to them ever again.

   I think it is important to put your health first and I also have found for my mental health it is important to ignore completely, tune out those who are not supportive. Sorry, but people have to earn my friendship and for me to speak to them, family or not. I think it is so important for your health to protect yourself from gluten and toxic people. :-)

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My immediate family was very supportive, but my mom was initially dismissive.  I broke down and told her that this was really really hard to do (stick with the diet) and that I needed her support.  Luckily she had just learned how to use The Google and did some research and did a complete 180.  Now she asks me about everything she makes for me and my family.  Can you somehow encourage your family to do a little research?  Can you offer them a night on the town if they research and answer a 10 question quiz (I don't know, just trying to figure out ways to incentivize them)

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By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

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By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

I get pity from my FIL. He's had two open heart surgeries, a few more heart procedures, two new knees, a new hip, he almost can't walk, and can't lift his arms, and can't hear an elephant go through a wall. And he thinks its terrible I can't eat gluten. Seriously. I'm the one that deserves pity?

When I felt and looked like dog crap, that was fine. But now that I don't eat gluten and I feel and look better I am an object of pity. Interesting.

Interestingly, he happily eats anything I cook for him...except kale. He still can't remember potatoes aren't glutinous - it's only been two years....

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i had been very sick for a very long time, so the people who know me take it seriously.  one of my friends who was my 'recipe/foodie buddy' from church made me stuffed grape leaves when i was first diagnosed and told me there was no gluten in it.  when i opened the container it had lemon sauce on it.  I ALMOST DIDN'T CALL HER and ask her what was in the sauce, not wanting to be picky, but sooooo glad i did "oh, there *is* a little flour in the sauce, i forgot!  but it's only, like, a tablespoon"  - i think she rolls her eyes at me but i don't care lolz - if i try to explain anything to her, she sort of shuts off or changes the subject.  she invited my husband and i to a dinner party, haha, i just drank (my own) beer, oops, she forgot about my celiac .  that's ok, i already ate :)

 

roll with it, baby, that's what i do.  good luck!

My hubby and I are former foodies/recipe lovers, I was always trying to copy something we had while on a date night or vacation.  I am just learning to be a foodie in a new way, and looking at my recipes differently.  I made our favorite pain de beuf the other day and replaced several things, but it tasted just as good as before and held up just as well.  The kids fought over the last piece.  Off topic, just wanted to add that there is life after for all of us Foodies.  

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By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

That is why my father, sister and I have a strained relationship, that will be their attitude.  We have different outlooks on life.  Be who you are, that is all you can do.  It took a lot for me to tell them what I have been going through and warn them to be checked.   If you try to tell her, that is all you can do.  Do it a couple of times, if you need to, say I am not trying to preach to you, but, and give her some links to read.  

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I don't know if this will help or discourage but it's what I have found to be true. When some people decide you or whatever illness you may have isn't meaningful there isn't a lot to be done except walk away. I know, we are talking about families but the same as we wouldn't keep eating something making us sick to prove that point, throwing ourselves against the unbreakable perceptions of these people will only leave us bloody and bruised.

 

I have found some actually enjoy watching us struggle and in pain. It's not your problem but something very wrong with that person unable to offer understanding to those they should care about. I know this personally and it took me a long time to realize. I was reminded of it recently. I made a choice to disengage from the battle, which was difficult because for a long time there were increasing efforts to draw me back in. I left the door open for pleasant, healthy, conversation and relationship but there was no interest in that. Over time the effort to provoke grew more desperate and ridiculous before eventually stopping. 

Of course it meant that all communication stopped because of the lack of interest in anything pleasant. The other day I received an "accidental" message followed by an apology for unintentionally including me in sending such an unhappy letter. So after reading the "apology", I deleted the other and didn't reply. It was an obvious ploy and I wasn't interested. I've spent to much of my life in that trap.

Some people don't realize their lack of consideration but others do and actually enjoy what they do. I don't know if any of you are dealing with this but knowing the difference can save a lot of grief.

Good Luck
 

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I don't know if this will help or discourage but it's what I have found to be true. When some people decide you or whatever illness you may have isn't meaningful there isn't a lot to be done except walk away. I know, we are talking about families but the same as we wouldn't keep eating something making us sick to prove that point, throwing ourselves against the unbreakable perceptions of these people will only leave us bloody and bruised.

 

I have found some actually enjoy watching us struggle and in pain. It's not your problem but something very wrong with that person unable to offer understanding to those they should care about. I know this personally and it took me a long time to realize. I was reminded of it recently. I made a choice to disengage from the battle, which was difficult because for a long time there were increasing efforts to draw me back in. I left the door open for pleasant, healthy, conversation and relationship but there was no interest in that. Over time the effort to provoke grew more desperate and ridiculous before eventually stopping. 

Of course it meant that all communication stopped because of the lack of interest in anything pleasant. The other day I received an "accidental" message followed by an apology for unintentionally including me in sending such an unhappy letter. So after reading the "apology", I deleted the other and didn't reply. It was an obvious ploy and I wasn't interested. I've spent to much of my life in that trap.

Some people don't realize their lack of consideration but others do and actually enjoy what they do. I don't know if any of you are dealing with this but knowing the difference can save a lot of grief.

Good Luck

 

That is why I use email to communicate with some family.  You are so right!

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Very very frustrating!! I am so sorry you have to go thru this! Support is a good thing and if you don't have it is is hard! I don't really say anything to my family except my Daughters and hubbs. I just say I am on a diet and cannot eat this and that! I don't have to answer to anyone but me! I personally believe that gluten is not good for anyone! Just because they can tolerate it doesn't make it good for them. When they ask what kind of diet I am on I say an all natural diet! If it comes out of a box or a can I cannot eat it unless it is natural :) 

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By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

Wow, it is even more sad to hear that people have so little discipline that they would give up everything. Hmmm... send her to the army asap lol or better yet to a country where food is scarce. She'll change her mind in no time. We are so spoiled in the U.S. Scary.

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Very very frustrating!! I am so sorry you have to go thru this! Support is a good thing and if you don't have it is is hard! I don't really say anything to my family except my Daughters and hubbs. I just say I am on a diet and cannot eat this and that! I don't have to answer to anyone but me! I personally believe that gluten is not good for anyone! Just because they can tolerate it doesn't make it good for them. When they ask what kind of diet I am on I say an all natural diet! If it comes out of a box or a can I cannot eat it unless it is natural :)

Wow, great idea. A non-processed food diet is ideal, right? Very healthy and great for weight management. I guess that's what I do automatically if I don't have the energy to explain Celiac disease, ha. Also, eblue, tell your family that Celiacs and people with food allergies are officially considered disabled by the government under the Americans with Disabilities Act. That should shake them up. :-D

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Check out this YouTube video by Better Batter that talks about "Stuff People Say to Celiacs".  It's pretty funny and I think we can all relate!  :lol:

 

 

 

Have a great evening.

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I can relate and find it very hard to deal with. It upsets me when people are so rude and belittling.

I have one friend who does the passive aggressive 'you miss out on so much' said with a subtext of 'its all in your head and you are making this up'. If I try to talk to her about it all she just changes the subject or pretends not to hear. I have tried to stick with it and not let it affect me but after reading this thread I realise that I am quite upset about it and will not eat with her anymore.

Yes, I have experienced the eye roll, the doubtful looks and some direct challenges.

I find that most of my friends now are either gluten-free or have their own food intolerances or other health issues. Those who have experienced the pain of being different are a lot more compassionate than those who have not.

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:o

:angry:

 

:)

;) 

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Welcome to the board, Happy canary,
 

I have one friend who does the passive aggressive 'you miss out on so much' said with a subtext of 'its all in your head and you are making this up'. If I try to talk to her about it all she just changes the subject or pretends not to hear. I have tried to stick with it and not let it affect me but after reading this thread I realise that I am quite upset about it and will not eat with her anymore.

This is not the behavior of a friend. If she was your friend she would not do this.

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Peter is right...and I have friends who have taken the time to learn about CC and have actually cooked for me while I supervised and I was fine. :)

 

Explain. Give them information from a reputable site.

Give them a copy of Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler (it has everything in it--good advice from celiac dieticians like Shelly Case and Tricia Thompson) , excellent articles by Celiac docs like Dr. Fasano and Dr, Green and  an explanation about how family members should also be tested .

 

This "schooling"  is in your hands, guys! Tell them, invite them over and cook for them and have them see that gluten-free dining does not mean"boring and tasteless" and then, let it go.

You cannot let them get you down.

Trust me on this.

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Check out this YouTube video by Better Batter that talks about "Stuff People Say to Celiacs".  It's pretty funny and I think we can all relate!  :lol:

 

 

 

Have a great evening.

Loved it. 

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Their ignorance is the source of their bliss. You can put yourself in bliss too by not giving a damn about their opinions.

What is the worst that could happen when they roll their eyes.. will that make you lose a leg, an eye, your house? Nope. Stop caring, and live your life with the people who understand you.

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Check out this YouTube video by Better Batter that talks about "Stuff People Say to Celiacs".  It's pretty funny and I think we can all relate!  :lol:

 

 

 

Have a great evening.

 

Awesome video. Every single comment in was said to me and even more

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First, that really has to hurt.  No wants to feel like the person that takes a pass on the family casserole.  Irish Heart is right, its on you to educate and cite reputable sources.  I'm in sales and my thing is this...  State someone's objections before they can.

 

So...

 

Them (Eyeroll)

 

You (I know, right?!  Its crazy!  I used to think that people that were allergic to gluten were just being overly picky eaters.  I had no idea that all it takes is 1/8 of a teaspoon to chemically create a reaction in ones body.)  

 

Them: WHAT?!

 

You: Yeah, its insane.  Did you know that if I cheat on my diet and eat one meal containing gluten per month that my mortality rate increases over time by 600%?  Thats why I never cheat!!!

 

Them: Whoa!  

 

You: Yep, its true.  If I can't check out the ingredients on a recipe, I have to stay out of it.  I CAN eat ALL kinds of stuff though.  Fresh fruit, steak, pork, chicken, but I stay out of the processed meats.  I still have my dairy. (hopefully)  Nuts, etc...

 

Them: Oh....  So what happens if you eat it?  

 

You:  C'mon, now.  Nobody wants to talk about that...  Alright look, my body fights gluten just like it fights the flu or any other foreign invader.  Now imagine that your body has to react like it has the flu every time you eat a meal.  Your body gets into an "inflamed" state over time that can lead to other diseases or even cancer.  Every time I eat the stuff, the battlefield of inflammation becomes my GI tract, my liver, and my intestines and over time it inhibits my ability to get what I need out of food.  So trust me, its not a fad diet for me. 

 

You:  It was tough at first but I know my resources now and to be honest, I'm a nutritional expert.  If you ever have questions about anything, I can probably point you in the right direction.  

 

 

That's how I play it off sometimes.  If you've already had your own version of this dialog and those same people are giving you "the look" they need to "look" at themselves and ask why they are so selfish.  

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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