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So Stressed! This Is All I Can Think About.. Please Help! :(

taynichaf

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taynichaf Contributor
taynichaf
Posted

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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taynichaf Contributor
taynichaf
Posted
  • Author

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

mamaw Community Regular
mamaw
Posted

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....

nvsmom Community Regular
nvsmom
Posted

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.

GottaSki Mentor
GottaSki
Posted

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 :)

GFinDC Veteran
GFinDC
Posted

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
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://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

 

NotMollyRingwald Apprentice
NotMollyRingwald
Posted

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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes!
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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