Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Symptoms And Self Diagnosis
0

3 posts in this topic

When I eat anything containing gluten my stomach feels like there are thousands of tiny needles in my stomach within a minute. Within 5 minutes my whole body starts shaking like I'm incredibly nervous and I cannot control it. I begin to feel nauseous and feel so weak that even lifting my arm is difficult. My heart rate increases and i have a hard time breathing.The shaking and weakness last for hours after I consume the food.  

 

I've had abdominal ultrasounds, blood tests, and stomach biopsy's with my GI and had no luck. Unfortunately, I do not know what the doctor was testing me for when I underwent these tests. I only know that the day before my stomach biopsy I went gluten-free on the advice of my mother (who suggested that I do it because my dad is allergic to gluten,soy, and dairy).

 

It's been almost 2 months since I became gluten free. The only time I've experienced the symptoms described above was the day I ate bread, in an effort to test my "self-diagnosis."  I've also noticed that I am more sensitive to gluten now than I was 2 months ago, the smallest amount of cross contamination will make me experience my symptoms. 

 

I'm debating how to proceed, I apparently was highly allergic to gluten for almost a year and lost a lot of weight (currently 99 lbs) and muscle due to the constant weakness and lack of nutrients being absorbed in my intestines. Do I go to a primary care doctor to make sure that gluten is the only thing I'm allergic to?  Should I make sure than the extra stress on my body didn't cause some long term issue? I have thousands of dollars in medical bills from the constant doctors visits and tests over the last year so I don't want to waste any more money or time if it is not necessary.

 

Any comments help :)

 

 Anne- 24 years old 

Michigan resident

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the board. :)

Celiac disease is not an allergy; it is actually an autoimmune disease with many symptoms, some of which you have, that attacks the small intestinal villi when gluten is eaten (as I understand it). To get a celiac disease diagnosis from the medical establishment, you need positive blood tests and/or a positive endoscopic biopsy after consuming 1-4 servings of gluten (ei. bread slices) per day for 4-12 weeks - the amount and time period varies depending on the source.

The most common blood tests are:

tTG IgA and tTG IgG (anti-tissue transglutiminase)

DGP IgA and DGP IgG (deaminated gliadin peptide)

Total serum IgA - a control test

EMA IgA

If you are not consuming gluten in the weeks prior to testing, there is a strong possibility that your test results could be inaccurate and a false negative.

Celiacs are often low in some nutrients like calcium,iron, ferritin, potassium, D, and B's. Thyroid problems are common too are should be checked if you have hypothyroid symptoms.

Other food intolerances are possible too. Lactose intolerance is very common but sometimes resolves with healing. Soy and corn are problems for some too.

If the test results are negative, you could have non-celiac gluten intoleranc(NCGI) which has all the same horrible symptoms except for the villi damage.

I hope that helped a bit. Good luck! I hope you find some answers soon.

0

Share this post


Link to post
Share on other sites

Hi Ann,

 

I had my first blood test yesterday after a week off gluten (and all grains). My doctor said that it takes six months for the antibodies involved in celiac to clear out. I suggest you go ahead and get tested asap, and also ask to be tested for the genetic marker.

 

Even if you don't have celiac disease you may be seriously gluten intolerant. But if you do have celiac, it needs to be part of your medical record.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,885
    • Total Posts
      919,478
  • Topics

  • Posts

    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
    • Potato Crusted Quiche Breakfast Casserole (Gluten-Free)
      Here is the Potato Crusted Quiche Breakfast Casserole that my Significant Other came up with. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Robyn08
    Joined