• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm Not Celiac...
0

5 posts in this topic

The blood tests came back "negative" now she said soemthing about less then 20 which meant negative is this true? I need to look up the testing results others posted. I was actually hoping it was this, because otherwise I am still undiagnosed. I know my bumps and stuff aren't as bad as the pics I've seen of DH- they are just itchy bumps and only get red when scratched too long... and I try hard not to scratch, but they are spreading and my tummy problems are gettign worse and they still kee telling me its just IBS. the drugs don't worka dn they have reversed the original diagnosis of Crohns because they say the test was read wrong and I didn't hae any scarring or ulcerations when they looked back at it... any suggestions would be welcome at this point.

I am pretty sure its food based, but I can't figure out WHAT FOOD! I have another appt on the 5th of August (she finally called me back with test results for the celiac test almost a month later, but won't move the other appt up) and I am going to ak her about sending me for an enterolab screening and getting insurance to cover it... because I can't help but wonder if it will make a BIG difference if we do it!

Does anyone else know fo ailments that do similar things- lassitude, diahrea and constipation both, fatty stools, basically I found like 40 yesses on the list of symptoms for celiacs.. that helped me hope it was that!

would going on a gluten free diet anyway maybe help if the celiac blood panel was negative?

Amie in MI

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


The blood tests could be negative and you still have celiac disease and/or DH. Go with Entrolab, because there results are more sensative than blood tests.

0

Share this post


Link to post
Share on other sites

Hi Amie:

I am sorry you are having such problems getting a diagnosis. There are many of us here that know exactly what you are going through. I went through so many procedures (colonoscopy,etc) only to be told I had a severe case of IBS, well I knew better and I would not accept it! I also leanred that doctors are not very educated on this disease and only see things in black in white, they want to see positive results, they want to see someone skinny, they want to see damamged villi etc...and if they don't they thinks its IBS. Of course in their defense it does take time for a disease to show up in the blood, but time was something I didn't have, I had already suffered for over a year. I took the enterolab route (along with my 8 yr old daughter) and our results were positive, we began the gluten-free diet and could tell a difference within a couple of days.

I think if your blood test come back negative that you should either be tested through Enterolab or try the gluten-free diet for a couple of months.

Good luck to you, I hope you get some answers soon! :D

0

Share this post


Link to post
Share on other sites

Thanks- mom says she thinks the doc is laughable because they are ruling things out without proper testing in her mind- she has crohns and I didn't have any new physical tests- just bloodwork, but they are saying because I didn't have physical signs of crohns 3 years ago I don't have it now... even though my SED levels are high, AND she says I sound like her friend michelle who has celiacs and went misdiagnosed for 10 years.

I think once I am back on 2 feet after Fri's wisdom teeth removal (no time to shop for things between now and then) I am going to go gluten free... I may be in the interim, I think most of the stuff I have to eat is safe, but I didn't doublecheck the spices I used in the low tomato mild chili I made myself after overcooking beans and some other things like that....

I am goign to call the doc this afternoon- she only mentioned 2 things being normal in my celiac panel but I thought they had 4, so I'm going to have a serious talk with her and ask to see the actual results- fax or email, since I don't want to wait until the appt on 8/5...

And I am going to seriously research other docs.. but I hate the idea of traveling out of the COUNTY to see one- this practice is the only one in the county, although tehre are multiple docs there, maybe I'll switch but she's the second one I've seen in the office.

Amie

0

Share this post


Link to post
Share on other sites

Wow, Aug is a long time to wait for an appointment. You know your body best sometimes and when it's telling you that something is wrong, something is probably wrong. I hope you feel better soon and that you get your answers.

Gretchen

0

Share this post


Link to post
Share on other sites
Ads by Google:


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
      106,808
    • Total Posts
      932,595
  • Member Statistics

    • Total Members
      64,302
    • Most Online
      3,093

    Newest Member
    AnLi
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.
    • Gaerty, I am glad to hear that you've ruled out the worst stuff. That at least helps clear any anxiety or worry you might have. I know that would clear up mine. I have good news! About three days ago my splinter hemorrhages cleared up 100%! The one that was on my right thumb was long and was there for about 2 to 3 months. I started taking this Vitamin C supplement 1000 mg once a day about 3 weeks ago. Whats crazy is that on the day I started the Vitamin C I noticed a small hemorrhage cropping up on my left thumb. It was very small. By day 7 of taking the vitamin C the one on the left thumb started growing out. By the second week I noticed the one on the right thumb shrunk drastically and by the end of week 3 they were all gone. By day 10 I also started taking 25mg of iron because all my muscles keep twitching. My B's and Magnesium came back good 5 months ago. I heard low iron can cause that symptom as well. So thought I'd give it a try.  I am not sure if it was a combo of the C and Iron or just the C that helped clear the splinter hemorrhages but for sure it was one of those things because they are the only things I have changed recently with supplements in the past 30 days.  
    • The nasal spray is safe, per the 2017 gluten-free drug list, but check the list as there are a few different manufacturers.   http://www.glutenfreedrugs.com/newlist.htm Claritin is fine.   Get a Nedi pot.  Helps tremendously.  It is safe.....100% gluten free.  Just use pre-boiled and the cooled water.  
    • Thanks Ravenswood. I need the strength and encouragement to keep going. The last sessions fall out was 4 days of my body revolting on a nervous system level.  I'll look into your acupressure book suggestion. I have done sinus acupressure for myself and my daughter for years but did not explore more.  In the past when gluten-free my fibromyalgia symptoms improved but since they come back the concern is it might be actual fibromyalgia.  After 2016 I found out I have Barrett s esophagus, fibromyalgia, additional food intolerance plus the gluten. I had in my head I was ncgs and it was all related to  that and leaky gut that occurred after my challenge., So I wasn't prepared to digest all the above. Pun intended. Thanks for the encouragement Awol
    • So I'll try to keep this short and sweet.  I'm a 25yo male and have had GI issues for about 7 years. Through many years and many doctors visits, I've gotten potential diagnoses of IBS, post-infectious IBS (d/t a Giardia infection in 2014), small intestine bacterial overgrowth, GERD, and even a strong suspicion of inflammatory bowel disease (Crohn's/Ulcerative Colitis). I've had two colonoscopies (no biopsies taken) and one EGD (biopsies only taken of STOMACH which showed chronic gastritis, not small intestine). Pretty much all of my tests have come back "normal."  I'll start by saying that back in 2014ish my blood results for Celiac were negative. My GI symptoms vary and fluctuate greatly... When I'm really struggling, I'll have chronic diarrhea, debilitating reflux, hours of burping after eating anything, epigastric and lower right quadrant abdominal pain, severe fatigue (nearly passing out), migraines, awful brain fog / depression, unilateral eye pain and photophobia, mouth ulcers, glossitis (tongue inflammation), and occasional bloody mucus in my stool if I'm extremely flared.   So my GP recommended I try a gluten-free diet after my IBD panel came back as negative. I reluctantly gave it a shot. I was gluten-free for about 2 months - slowly but surely, my chronic diarrhea relented, fatigue lifted, and my reflux nearly disappeared (to the point of considering stopping my omeprazole). Since eating gluten-free is so difficult, I decided to try a 3-day gluten challenge to see if gluten truly was the culprit. I ate gluten products 2-3 times/day for 3 days. It made my reflux a bit worse and gave me some pain, but nothing severe. My tongue however started progressively burning/stinging that week.  The BAD symptoms came about 2 weeks after my first gluten exposure... My acid reflux became MUCH MUCH worse, despite medication. I lost about 7 pounds over 3 weeks from not wanting to eat. I had much more abdominal pain. My tongue became very inflamed and sensitive to eating/drinking. I got mouth ulcers. I became very depressed, irritable, and brain-fogged out of NOWHERE. I was nauseous and having headaches. It was NOT fun. That's when I thought, "Ok, I am definitely more sensitive to gluten than I thought." That was about 6 weeks ago and my stomach is still feeling the effects of those 3 days. So, my questions: Has anyone experienced a similar story? Has anyone had lower GI bleeding with celiac? For those who have Celiac, are your symptoms typically delayed like that (2-3 weeks)? I know NCGS is supposed to have much more immediate symptom-onset. Has anyone tested negative to blood work, but positive on small intestine biopsies?   
  • Upcoming Events