taynichaf

Sorry... Once again I am very frustrated about this! My blood tests came back negative and I just had an endoscopy yesterday and am just waiting for the results...

I feel like family history on my moms side could indicate celiac...

My great grandmother died of multiple myloma.

My grandma has been going to the doctor for a reoccurring rash on her bottom, but her tests were negative... She got a referral to a GI but now canceled her appointments..

My mom had lupus

And now I got diagnosed with a hiatal hernia and GERD from my endoscopy..

We all have a history of anxiety and depression.. I'm trying to be patient but the closer I get the harder it issss!

So, all I'm asking is, Do you think all of these family problems could be related to celiac disease??

HI!

Earlier this year my sister was diagnosed with Celiac after she presented with fairly typical symptoms (daily diarrhea, bloating, abdominal pain).

After her diagnoses I asked to be tested as well. I just found out today my blood test was positive and my physician told me that given my family history and the blood test she did not think a endoscopy/biopsy was necessary. However she didn't seem too knowledgeable about the condition because she said I would "probably benefit from going on a gluten free diet" whereas my research seems to indicate if you have Celiac, going gluten free is not optional.

I do have some atypical symptoms including missed menstruation (previously attributed to PCOS, although I am second guessing that diagnoses), constipation, occasional (but more than normal) abdominal pain (mild-moderate).

Bottom line: my parents think I should get the endoscopy like my sister did to confirm. Do you think this is necessary/advisable?

thanks!

Yes get one before you go gluten free. You are a celiac and that means gluten free for the rest of your life! And somewhere down the road you might run into a doctor that will not take positive blood results as a diagnoses or something... idk, doctors are kinda dumb :/ ha. So just do it now, and get it done with! Its good to also be able to see how damaged your body is.

Good luck! I too had missed menstrations but negative blood tests I'm now waiting on my endoscopy results... I'm praying that the biopsies are positive... PLEASE pray for me! <3

when my daughter had her endoscopy, everything looked normal too.. biopsies confirmed celiac.  

If this is my case I will be happy. Thank you for this info. Hope your daughter is doing well with her gluten free lifestyle!

Lol!! As someone who just had this same experience I have to laugh. Hard!! I totally requested and consumed a gigantic rootbeer float after my EGD and I have zero memory of it. Pity, that's an experience I'd rather remember!

So glad they took adequate samples, hopefully that means your results will be absolutely accurate. celiac disease or NCGS, I pray you have an answer soon!

Lol! Yeahh my mom took me to a fast food place too... Don't remember much but i guess I ate a ton haha. How did yours go?!

Ohh and i slightly remember asking the nurse for apple juice, hahah. And right when I woke up I was like WTF? and then I like was trying to get out of the chair and someone had to stop me...

Ooops! I don't remember making this post ha, but I guess I have GERD and a hiatal hernia... unless those are the same?... does anyone know if THOSE can be linked to celiac?

Ohh and I am so happy with my doctor! He said they generally take 8-9 biopsies and hes like the head of a celiac organization or something, and he knows about non-celiac gluten sensitivity

I'll know the results within a week, but he said everything looked normal... :/

And then he diagnosed me with acid reflux..is that a big symptom for celiac disease?

We love to shop at Costco... it makes my gluten-free 3 yr old very happy that they always, always have gluten-free samples.  Seriously... for every gluten sample they have, there is another nearby booth with a gluten-free sample!   

They need this at Sam's club! I only go there for the samples lol. I'm not eating gluten free yet, but this post should come in handy soon

He could actually diagnose me with NCGI?!?! I'd be happy with that, ha. I just really want some kind of diagnoses! But okay, those are great questions, I'll ask them as well. Your appointment is one day before mine! Hope all goes well for you!

If the damage is patchy, it is very possible to miss it, regardless of how many biopsies are taken.

Hi, I am getting and endo/colonoscopy done.. this friday! Yay! Im actually more excited for this then I am for my high school graduation in like a week, lol. Anyways, I will call the office tomorrow to ask if I will be able to talk to the doc before surgery, but what were your expiriences??

I'm just so afraid that he wont take enough biopsies or just SOMETHING, and he'll miss something... I plan on going gluten free no matter what after this, but I just want to POSITIVELY rule out celiacs...

So what questions should I ask??? And any advice for preparation?

THANKS!

I think your worrying too much about this! If she likes you, she likes you... not for what you can or cant eat. And if her sister is gluten intolerant, thats a plus! She understands what you can and cant eat. Let her go get burgers with her friends or something, you two wont be together 24/7 anyways, ya know?

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!

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

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..

Hello all,

First time poster.i have been diagnosed celiac since January 2012..My one year endoscopy showed villi in partial remission ,but have along way to go.I am having trouble with complex carbs the only ccs I can handle without bad gas and bloating is sweet potatoes and regular potatoes.I am needing other options for my glycogen storage.I am worried about the damage of gluten-free grains since it causes this reaction .I know it's not causing villous atrophy ,but will it set my intestinal healing backwards if I eat these grains .I am obviously fatiguing due to the lack of good complex carbs.IS it also unhealthy to only eat nightshades as my source of carbs as glycogen? Thank you very much for your time.

Charlie

Hmm.. You should try a low carb/high fat diet. The first few weeks are tough, but after that you get continuous energy and no need for carbs! For body builders though, they have a "refeed" day, where you eat low fat and high carb to restore your glycogen stores... Just a suggestion, if you can't find much carby things to eat. Ohh, and this diet is also amazing for fat loss! It's actually the diet that helped me realize my gluten intolerance!

Just let her continue to eat wheat for a few more weeks, and then go back and get tested again. Make sure you get the FULL celiac panel as well. I was tested for celiac twice, both came back negative, but they were also just the older tests. My doctor set me up with an endoscopy appointment now, so if this comes back negative, then I guess I just have gluten intolerance, but for now i dont believe the blood tests were very accurate.

I also have iron deficiency, and I get a bunch of mucos in my throat, and I get winded just from walking, ANYWHERE. I think all these problems are related to gluten.

And if your daughters tests come back negative again, you could just consider her to have non-celiac gluten intolerance(which can only be tested through eliminating gluten)

Ahhh i love my daddddd... I'm still crying... but i called him and he keeps on telling me he'll take care of it and either way ill have insurance by monday.. thanks again all<3

Ok thanks guys... the panic attack passed, but im sure it will come back... I called the insurance company and they said theyd have to take a few days to investigate :/ I called my dad crying and he said he would see if he could put me back on his insurance, but will it work within 10 days? I suppose it all varries but uuughhhhh... and it doesnt help that my moms all "and then what are you ganna do when the tests come back negative?!"

Sorry... I just dont know who else to go to for help...

Im doing the gluten challenge for my endoscopy coming up in 10 days.... Now I don't know what is going on with my insurance!! I'm under my step dads, and then he got laid off, and now he just quit. No one else is trying to figure out my insurance issue so I'm calling the companies and they dont no whats going on... Omg i just cant stop crying and im hyperventalating... ughhhh please help me! how do i calm myself down!? This is making me a wreck and i dont even understand why.. help!

Yessssss. While on gluten I feel pessimistic, and then off of it im very optimistic, talkative, and excited for the future! I'm so excited for when i get to start back on my gluten free diet! And also after being off of gluten, the day I started eating it again my emotions went crazy. I just felt so lost and couldnt organize my thoughts, and I also started crying because my mom yelled at me for something reaallly stupid(i dont even remember what it was).

So yes, it does! gluten gave me anxiety and depression... Yet I never actually thought I was depressed.. Its strange, but makes sense now

Although I did'nt lose that much weight, in about days of eating gluten free i droped like 5 pounds without even trying! For a year now, i've been eating healthy and exercising, but I just could not lose any weight! (unfortunatly, "healthy food" includes wheat and whole grains) These 5 days of being gluten free, I ate a whole package of gluten free cookies in one sitting, TONS of KIND/lara bars, two packs of rice cakes, I think two jars of peanut butter.. and the list goes on. Anyways, during these days i was STARVING! I just could not get full! I thought something was just really wrong with me, but I think it's just actually that I couldnt feel my hunger for so long due to gluten.

Anywayssssss.. Maybe you have other intolerances? Or maybe your body just needs more time to adjust. Also, in the days when I didnt eat gluten I did not exercise at all, and I was sooooo tired, but I finally felt like I would get good sleep!

Maybe she is intolerant/allergic to other types of foods?

Getting enough good fat would help you to feel full  Good fats as recommended by my nutritionist would include butter, coconut oil, or olive oil.  I have been recommended to have about a tablespoon of fat per meal.  Just so you know, I am not a blimp from this, I am 5'7" and 160 lbs.  I know people don't recommend eating fat, but it gives energy and makes you feel full.

Yes. Fats are very filling! People seem to be afraid of them thinking that eating more fat will make you fat... WRONG. More healthy fat will probably help you lose weight! It keeps you full longer and helps you feel satisfied. I realized this when i started a low carb/high fat diet... which is actually how I found I have a gluten problem! I droped 8 pounds in 2 weeks

Are you upset about getting smaller?!?

You can do it! You can't give up now, or the last three weeks of feeling like crap would have been pointless.