taynichaf

An answer, for some reason, is very important to me as well! So i get it

The only test for celiac that doesnt require a gluten filled diet for accuracy is the genetic testing... This alone wont diagnose you with celiac though, and I've heard this test has resulted in negatives for people later diagnosed with celiac by biopsy/blood tests. I think that a biopsy and blood work now will be totally useless since you are already gluten free. Unfortunatly, the only way to be officially diagnosed is by doing a gluten challenge and going through with blood tests and all that... But I wouldnt even do that if I were you.

I've also read that if someone has DH, it does not mean they have celiac disease.... I'm not sure how true this is, but it also says that the gluten free diet helps those with DH. I think this testing would be your only hope at this point! I don't know much about gluten intolerances because I jsut discovered I had one, but I have been doing CRAZY research on it! I mean, what do you even have to lose by doing a skin biopsy? You might test positive or you might test negative, either way you should be gluten free

You could always just do a self diagnoses... No one has to know! Lol. Just call yourself a celiac and go on with your happy, gluten-free life

 

I am not sure how to start this journey.  I ended up here after doing a 2 week detox as a jump start to turning my health around. As I tried to add back in grains (quiunoa, rice, etc not wheat), I soon had inflammation,  edema, and muscle aches. My GI symptom is constipation unless I am heavy on the magnesium citrate.

I had allergy testing about 20 years ago when I suspected peanuts were causing migraines. I remember testing positive for histamines and chicken (yeah who does that?)  Peanuts do cause migraines and dairy causes horrible eczema. I suspect a gluten allergy/sensitivity caused my edema six years ago (my right calf often looks like I have a major DVT going on —just the right one.) I now have a DX of lipedema with possible secondary lymphedema.

 

So my question is: What do I do to get DX? – I have read about the DNA testing, but if I get that then what? How do I find a doctor who knows what to do? who will respect the testing and get me to where I need to be? I am struggling as I feel if I say "gluten sensitive" without a doctor's note I will be accused of jumping on the media diet sensation bandwagon.

 

Any advice would be welcome.

I live in the central Ohio area and have excellent insurance.

 

It will all work out.... I started out so overwhelmed because I felt like I needed a diagnoses as well... Now I just want to be positive that I do not have celiac disease, but after the testing i'm going gluten free for life....

Just start by making a simple doctors appointment, and just tell them your symptoms. Tell the doctor what you think the problem is and how you figured that out. Also, if you are eating gluten free blood tests will not be very accurate. I'm sure someone will post the right things to test for, because I don't know them off hand... But DEMAND they be done! My last two doctors appointments, I showed them specific tests I wanted done, but they didn't do them..... so now i'm going back to a different doctor, will all my previous tests and I am not leaving without the right tests! Lol, sorry, still a little angry with the doctors..

I'm new to this, but I have done a lot of research and asked many questions on this forum, so feel free to message me if you have any questions, or if you just need to vent about this!

good point and it's that simple.  when i quit eating gluten, i got better.  

 

$$ is so tight for nearly everyone these days.  if eating gluten free is making you feel better and your folks can do it, what if you just wait - you should be able to tell  

 

ps - nobody makes me whip out my diagnosis.  alot of times i don't even mention celiac.  i just say i can't eat gluten.  plain and simple.

 

pps - your sn makes me want to call you 'tiny chef' lolz  

I'm over the thought of having to explain to people about my gluten problem... I could care less if they believe me lol. Its just my mom.... She has called me a hypochondriac, and I just feel like I need to prove something to her. She thinks shes gluten sensitive, but not as far as celiac disease. I still live with her, and I just want to absolutely rule of celiacs, that way I know the damage being done to my body. So really, I just feel like my mom wont take me seriously if I want new shampoos or toothpaste.. She doesnt believe in cross contamination either :/

And lol, well, my name is actually first 3 letters in my first, middle, and last name.

Once you have the blood test requisition form in your hand make sure it's the tests you want.

If it's not don't be shy to give it back to her if it's the wrong test. You are the boss.

And you don't have to go the same day to the blood lab.

You can wait till you've done your gluten challenge whatever amount of weeks you decide to do it.

Lol, I know this now! I'm not leaving the office unless it's the tests I want!

Thanks for everything

I'd wait till you have positive blood tests before doing the endoscopy which is more expensive than the blood tests.

 

The blood panel will cover more bases.

 

Off the top of my head the DGP-IgG is about 98% accurate and the EMA is 100 % accurate but it is less sensitive.

 

If you are short on money for blood tests, at least go for the DGP-IgG.

I might just get that one myself in the future as my IgA is normal low.

 

While you are waiting to do the tests,  phone or visit the blood lab and ask for the code for the panel.

Tell them the doctor gets it mixed up.

If you decide you want DGP-IgG,  write it down, tell the doctor that is the test you want and read the paper she gives you.

If it says tTG then give it back to her and say you want DGP-IgG.

She problably has no clue about DGP tests as they are newer and more specific but we know what it is.

 

You have to consider that your problems could also be caused by Crohns or colitis, if it's not Celiac.

Find out this summer so you can enjoy the rest of your life.

 

 I hope you can find out what is your true problem as you are young and starting your life

and you want to put all your illnesses behind you before starting College in the fall. 

Ok... I'll make a new doctors appointment and have all the tests picked out and everything... thanks! And I will do research on the other two, but I don't think I have crohns because I have C instead of D, and weight gain instead of weight loss.

Pretty reliable. Ask the experts:

Open Original Shared Link

Open Original Shared Link

Awesome, thanks!

I've had people tell me that there are many false negatives and the blood testing isnt all that reliable... and then theres the people that say false negatives are rare with blood testing.... WHICH IS IT?!

I'm really freaking confused on wether or not to go through with my endoscopy or not because my tests were negative(although they were not the full panel :/  )

Guys... My mom is really against me getting the endoscopy due to money... This is just making everything worse! Ughhh... I just feel like crying.

Better to just do the genetic test and if you have the genes just don't eat gluten, pretty black and white. It's not worth taking the chance if your genetically high risk. My first child is due soon and he wont be seeing any gluten until he's had the test, if he's inherited DQ2 from me he will never see gluten while he's under our care. My wifes of spanish and asian american decent and is tough as nails digestive wise and totally immune to eating grains goes so I'm hoping he gets those genes from her. I'm engilish / irish and it's all bad news for grains for me.

I was going to get the genetic test done, but i've been told even that is not all that accurate because there are different genes besides the 2 usual celiac ones... if that makes sense. I'm also just going for the endoscopy because i would rather have a diagnoses.

thank you very muchhh <3

I was gluten free for 2 years.

I restarted eating bread in November.

I might be scoped in June but I'm trying to find a better gastro doctor,  I didn't like the one I met.

 

 

................................................................................................................................................

To answer your question:

 

What I read was that you have to be eating  4 slices of bread per day for 12 weeks.

 

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source:  Open Original Shared Link

 

 

A biopsy for celiac disease looks for changes in the small intestine that happen when you eat gluten. If you have stopped eating gluten, your intestine may have begun to heal and that can lead to a false negative result (a negative biopsy even though you have celiac disease).

In general, the recommendation is that you eat the equivalent of 4 slices of wheat bread every day for at least 3 months before a biopsy. Your doctor may have different recommendations for you, based on your own medical condition.

We don't know a lot about how long it takes to redo damage after your gut heals, so this might not be enough time to re-introduce damage.

2 years!! Thats awesome! But it sucks that you have to do the challenge after such a long period of time...

I was only intentionally gluten free for 2 weeks, and light gluten since January.. I don't think i'm willing to wait 12 weeks of feeling like complete crap to finally get a diagnoses.. I feel like i've already wasted much of my high school years, and i'm determined to have a good summer before im off to college. I'm going to call and push back my appointment a week or two, but i dont think i can push it back any longer! thanks though <3

I have very bad anxiety too! I think it is due to gluten... this gluten challenge has me overwhelmed about the littlest things!

If it's any consolation I'm in Canada and I had to pay for the Celiac blood panel and the food intolerance blood test and even my vitamin D test.

 

I think it's best to not gorge on the gluten foods (donuts, cookies),

just eat 4 slices per day but give it more time as you only have one shot at this.

 

 

The Colonoscopy at the other end could help rule out Crohns and Ulcerative colitis. (or do it another time)

 

https://www.celiac.com/forums/topic/2687-ulcerative-colitis-vs-gluten-sensitivity/

 

You are young and need to find out what you have so that you can move forward and age heatlhyly.

 

I hope you can find a  financial compromise.

 

I got to go eat a sandwich for supper now (for my gluten challenge).

Im only kind of "gorging" on gluten because it doesnt fill me up.

You think i need to wait longer than 5 weeks?? I know this is my last shot so I want to make sure to give it long enough.

How long are you doing the gluten challenge?

 

 

 

list two

Strange brain zaps - like an electric shock inside head that lasts seconds but is scary

feeling like someone is glasping the top of head pressure

pins and needles in feet and hands

sharp pain lower right hand side of stomach - stabbing pain

tension in shoulders etc

 

 

Yes! I had the "brain zaps" too! It wouldnt last long, but how i described it was my brain vibrating, then i would get a little dizzy... I havent had this for awhile, but its nice to know im not the only one! I wonder what it actually is though..

I just got an endoscopy scheduled for about 3 weeks from now... Do you think thats going to be enough time eating a lot of gluten?? I've already been eating a lot of it for about 2 weeks...

Also, (I live in the U.S.) how am I supposed to pay for this?!?! I'm still under my parents insurance but my mom says they probably wont cover any of it.. I'm 18 and can't get a job, and I feel so bad for making my parents pay for all these medical bills

Keep eating a few slices of bread till the next blood tests.

Maybe providence feels you don't have enough gluten yet?

Next time look at the blood test sheet when she hands it to you and give it back if it's not what you asked for.

Just tell her you read it in a Celiac book. (say Dr Green said so).

Don't feel bad about making the doctor feel bad about your blood test list.

You are the client and she's so busy she'll forget about you after you've left.

Ok! Thank you!

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.  

I think I need to have the endoscopy so i can no for sure... I'm just getting soo frustrated with all of this! But ohh welll... I really tried getting my doc to order those tests! But I don't want them to think, that I think, I know more about all this stuff then them...if that makes sense? ha

If I don't go thru with the biopsy, then I will DEMAND those tests! But I think I'm just fed up with the blood tests atm...

Thank you

my blood test was negative, too.  my GI already knew that i had been eating gluten-free but she had me tested anyway - BUT - she also tested me for many other things, to rule them out.  (like crohn's, thyroid, etc)  i got my dx when i had the endoscopy.  in fact, she could actually see the damage.  after i got rid of the wheat, and i mean for quite a while, other things (that maybe i thought were caused by other allergies) cleared up as well.  good luck

Okay, this gives me hope! Thats great that your feeling better! I'm going to message you with a few questions..

Was it a handwritten note or did you print it .

Were the fonts big enough?

Did the doctor have her glasses on?

 

 

 

You do all the work and she still messes it up.

That is so frustrating !    

It was hand written, but it was readable! The first doctor said they didnt have all the tests I asked for... And the second doctor I dont think even checked. And I pointed it out to BOTH of them! Very frustrating... And the thing is I have been going to doctors for a few years now and have had a lot of testing, so everything else is pretty much ruled out.. Just gata be patient:/

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.  

Before I was so sure that I just needed a biopsy and then this would all be over with... But I think this gluten challenge is making me so anxious and overwhelmed.. ughh. And both times I went to the doctor I wrote down all the celiac tests and gave it too them and I even underlined and bolded the world FULL celiac panel..

HA !    We're in the same boat but I was there first.

 

Can you tell us which test?

 

It's so frustrating to see the doctor didn't do the panel. 

When I was researching on Celiac.com, I read of people who had only one positive on the panel.

When the doctor only does one test you have less chances + you were gluten free.

 

I don't think you should assume you have gluten intolerance.

Back in 2010 my PCP (not the one I have now) assumed the same thing

without testing me at all and all my problems returned in 2011.

I kept thinking it was hidden gluten but then I was just eating produce.

By then it was too late to do the testing.

 

Now I don't know what I have.

Though the food intolerance blood test showed I have a wheat intolerance + many others.

 

Check out this information:

 

Open Original Shared Link

 

and 

 

Open Original Shared Link

 

 

It's better to be patient and find out what you have then to be guessing forever. 

 

Marcus

It was the TTG IGA AB test.... I think it's better to be patient then to be guessing forever too:/ But now I just have my doubts.

How do you get tested for food intolerances??

2nd blood test = negative!!... And once again, the doctor only did one test. She gave me an option of the next step of the biopsy.... but should I even bother?? Or should I just end my testing here and concider myself non celiac gluten intolerant?

Some people do get mouth sores or ulcers and have issues with their gums from gluten (I surely did)

and it is possible that a gluten challenge has sparked these symptoms.

 

How long were you gluten free before the challenge? How long have you been back at it and when is your test?

I dont know for sure how long I was gluten free... I only found I had a gluten problem by doing a low carb/high fat diet for two weeks, and then I ate a bunch of gluten followed by random stomach pains for like a week. So i started research, and then would try gluten free for a week and then eat again and I've done that for awhile. Also, Since the begining of the year I started eating very clean and healthy, natural foods, and this is when my depression symptoms started to get better.

I have been eating a lot of gluten for almost 2 weeks now... Im mainly eating unhealthy stuff that i havent had in so long too. And im gaining crazy weight! Never really hungry, but i keep eating because im never satisfied.. and my breathing is fraking terrible lately! I have to sit down for a long time just to catch my breath... and im an 18 year old girl! I shouldnt be having these problems!

i sure hope you are right on the whole heart racing thing, it happens to me and it scared the crap out of me. i thought i had some sort of heart problem

This is actually one of my first "glutened" symptoms. And I get out of breath just from walking!

I am very new to gluten-free and I am finding it keeps getting more difficult rather than easier. I have be diagnosed with celiac disease for less than 3 months now. It was easier when I was at home at the beginning, but moved back to college and things are tough. So to start I go to UW - Madison. I am a beer loving Badger and now I have stopped drinking all together ( I have a slew of stomach issues associated with (but not caused by) celiac disease). I never realized how many of my relationships here were built around going out to eat or drinking. I am trying to be really clean so I pretty much have cut these two things out of my life.

The second thing is advise about how to eat at college. I share a small kitchen with 6 other girls. None of whom are gluten-free. I have my own pots/pans/plate but I am always worried about CC (so worried i often wash my own stuff both before and after). Any tips on staying gluten-free in a shared kitchen. Then comes the real problem. I'm a broke college kid. gluten-free isn't cheap. At all. How do you deal this. What are your suggestions on eating. Then there is being on the go. I am busy and I usually don't have time to stop and eat nutritiously. I have for the past month been subsiding on gluten-free meal bars, Trail mix, nuts and fruits for lunch. I can't really afford to buy lunch at a cafe and i don't have time to stop home to make something. What is something I can throw in my back pack and pull out when I have 15 minutes to eat.

Finally I want to talk about symptoms I have and see if others are having these too. I seem to be constantly thirsty. Then I always seem to be starving. I don't know if this is because I am not eating "regular" meals especially at lunch. An couple of odd symptoms I have been having is some uncoordinated and other times random racing of my heart. I have read this might be due to electrolyte imbalances. Other symptoms I have seem to be related to exposure to gluten (nausea, the big D, head foggy-ness). It always seems that I get glutened at the worst time possible.

This life style change has been really hard for me. A lot of people talk about how wonderful it is to cut gluten out. But that hasn't been the case. Its seems like a constant uphill battle to me. Which is why I am reaching out for some help.

I can't give you much advice... but we live in the same state! I thought that was kinda weird ha... we live like a few hours away from eachother.

If your afraid of CC you could probably lock up your pots and pans that way you KNOW no one has used them. As for going out... just don't eat the food! Like you said, your broke anyways, so just save all the money you can for food you can cook yourself. Maybe you could get your own mini fridge somehow and prepare gluten free dishes that will last you about a week, so that you have food on the go. And also, when i go gluten free I'll probably be carrying around protein bars in my purse for an emergency snack:)

I hope this gets easier for ya! I think college would be the toughest time to be diagnosed, but I'm sure you'll find a way to work things out

Or maybe I never noticed?? But I'm starting to get sores on my gums that are turning into ulcers.. Is this a gluten intolerant thing? Or does it indicate lactose intolerance?