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So Stressed! This Is All I Can Think About.. Please Help! :(
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I have a long list of symptoms that go along with celiac disease, and I have had them for awhile, I just always thought they were normal. About 2 years ago is when things started to get worse. The begining of this year I joined a nutrition challenge, so I was pretty much cutting out bread and eating natural foods. I had a few slip ups and then i tried a low carb high fat diet.. Then i had a slip up after two weeks and had a huuuuge gluten binge.. The next couple days I would get random stomach pains and my fatigue just got worse as i continued to eat gluten.. So that lead me to search my symptoms and then I found celiac disease. After going to different doctors for about 2 years, I was extremely happy when my symptoms matched celiac disease.

 

I went to the doctor about a week ago and he tested me for it (NOT the full panel...makes me angry!) This was only a week into my gluten chalenge and I have been fairly "low gluten" for a few months before the test. THE TEST WAS NEGATIVE, but I had unexplained deficiencies. I was in sooo much pain just a week into the gluten challange that my doctor said im atleast gluten sensitive.

 

I just can't figure out what I should do! Either way, I will not eat gluten, and as of now i consider myself NCGI, but I just NEED to know for sure!

 

What should I do?? I was thinking about just going back to my doctor and demanding a DNA test for celiac, that way I can rule it out or not? And then probably trying the gluten challange again, for a longer time period :( and praying that the test would be accurate this time..

 

 

Thank you so much for reading<3 I've been posting like crazy on this website, but I feel like I have to be my own doctor and it's extremely frustrating! I want to figure this all out ASAP because I'm 18 years old and will be going to college in a few months and gluten is ruining my life!

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And I have been trying to get a copy of my test results, just to see, but the doctors office hasnt replied back :/

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I  would  ask  for the  full celiac  panel,  an  endo  with  biospies ( at  least  three)... Not  knowing  how  young  you are I  think  if  you  are  school  age  or  college  age  you need  to  have  some  documentation for  that  reason... But  if  the  doctor  says  you  are  gluten sensitive  there  is  no  testing  available at  present  for  that  . Either  way the outcome  is  the  same  , a 100% gluten free lifestyle....

Myself, I feel  that one  needs to be  on  gluten  for  at least  several months  to get  accurate  testing.....oops,  sorry  I just  reread  your post  & now  see  you  are off to college....

Most  doctors  just don't  get  it  yet  so many of us  understand  your  aniexty... You  could  look  for a  doc  that  understands  the issues  of  celiac   / gluten  sensitive....

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I think it's smart to get those blood test copies. They could tell you a lot. The DGP is one of the better celiac tests for early celiac disease or eating "gluten light" - it won't be as accurate as if you were eating gluten everyday for a couple of months but it might work for you.

 

I think gluten intolerance is a spectrum, and this view is becoming more popular.  Some gluten intolerant people are celiacs in that it causes the immune system to attack the gut, others have skin attacked. There are also the other symptoms like ataxia or neuropathies that they don't have a specific label for but sound very scary to me.  You fit somewhere on that spectrum. Celiac  is just one point of the spectrum. Gluten can affect people in horrible ways... Unfortunately the only tests we have are based on intestinal damage (if your intestines are damaged it is usually a positive test) but hopefully they'll come up with better testing for the other gluten intolerance symptoms in the next few years.

 

In the mean time, can your doctor give you a NCGI diagnosis (on paper) so you can have accommodations made for you at college? You'll need to take care of yourself so you feel well enough to do well at school.  Hang in there.  All you can really do (if testing is indeed done) is stay gluten-free for at least 3 months - 6 is better- and then reassess if your health has improved.  I suggest keeping a food and symptom journal to keep track of every little symptom and how long it lasts so you'll really be able to see any trends.

 

Best wishes.

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Oh Sweetie - Welcome!

I hate seeing that another is experiencing the frustration I lived for far too long...you have had excellent advice from the previous posters.

Do let us know if you have more questions :)

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Hi,

 

Getting the gene tests is not bad idea.  Having the genes doesn't mean you have celiac disease, but it does mean you could develop it.

 

Here are a couple articles about NCGI.  The symptoms of NCGI can be very similar to celiac disease.

 

Non-celiac wheat sensitivity article
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
http://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

Here is a video on gluten that might help too.

 

The Gluten Experts Video

 

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I'm new, too, and can't really add to the awesome info above, but I just wanted to send (((HUGS))) your way. 

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    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
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