Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here. Not Sure If It's Celiac Or Gluten Intolerance


Abbizzy

Recommended Posts

Abbizzy Newbie

Hi,

My name is Ann, I'm a 40 year old Aries who likes long walks on the beach....oh, sorry, wrong forum ;)

I do think I belong here...I either have gluten intolerance or Celiac's. I'm trying to navigate my way around this forum so please forgive any posting faux pas :) . I haven't been formally tested, but plan on going to University of Illinois, Chicago for a free blood test in October.

About 6 months ago I was googling my symptoms and self-diagnosed with Celiac's. I then forgot about it for a while, thinking there was no way I had Celiac's (this is when I thought it was so very rare!). About a week ago my SIL who is a dietician and I were talking about my Mom who was just dx with anemia. I mentioned that I too, am anemic and she immediately said that with my IBS and anemia I should be tested for celiac's disease and told me about the test at UIC (I'm a Chicago girl). I know that I have to actively be on gluten to test but I decided that since it's over a month away I would try a week gluten free...what an eye opener!!! I was free of my symptoms and felt great until some french bread and spinach dip called my name and an hour later I absent mindedly tasted my DD's pasta (actually did it twice in 10 minutes, once for each DD! UGH!). I am sick, sick, sick. Not exactly sure how I'll suffer through eating gluten for a few weeks prior to the test now that I've spent some time on the gluten-free side of life.

My 7 year old was dx with IBS at age 4 or 5 so I'll have her tested too and my SIL seems to think my Mom may have Celiac's as well so I'll have her call in for a consultation and hopefully get tested. My 8 yo dd doesn't seem to have any bowel issues, but if either: me, my Mom, or 7 yo have it, I'll have her tested as well.

I look forward to going through the posts on this community and learning all I can. So far, I'm not finding eating gluten-free to be difficult. Fortunately I cook a lot and my lunch out of choice is Chipotle Burrioto Bol. I'm just sad about the absence of Jimmy John's sandwiches and things wrapped in tortillas!

Look forward to learning about your community.

Ann


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



curlyfries Contributor

Hi Ann, and welcome! :D

My DD was also dx with IBS (spastic colon) at a young age. Her symptoms disappeared during her teens, which sometimes happens, and then returned in her 20's. Now at 23 she has a host of other issues that I believe could be improved once she is gluten free ( she has just started and is still trying to find her way). I never knew about celiac until after I had been suffering from my own symptoms for a few years. It's great that you are able to discover this early.

BTW.......LaTortilla Factory makes gluten-free teff wraps. I steam them to soften them.Their web site has a store locator. I buy mine at Meijer's.

mftnchn Explorer

Welcome Ann, and lucky you to get in on free testing!

Hopefully having tasted of the better life, you'll be back regardless of your test results. You need to know that there are a significant number of false negatives, but a positive is for sure. If you don't eat gluten up until your test you are more likely to test negative.

Let us know how this all turns out. This is a great place for questions. Since often the same questions are asked repeatedly, try to get good at the searches and look first for your answers. That brings up a whole wealth of info that might be from people no longer active on the board (healed and moved on, LOL!)

gfp Enthusiast

I almost never ever say this BUT.....

I think you should consider going onto gluten for the rest of the month....

You were not gluten-free for so long but obviously it worked well....

If you get a positive blood test it will be simpler (although as noted you will probably become gluten-free anyway) but in your particular case you have been gluten-free such a short time and the test is only weeks away.

The reason I say this for you is because after another 4 weeks going back onto gluten is likely to be much worse.... if your recovery is good and your test negative you most certainly won't want to go back in another 4 weeks.

Note: I said consider.... I'm not saying you should but I think you might want to look at what you would do if the test is negative and you were gluten-free before the test. Your SIL seems clued up, perhaps you can also get her input...

(and really I rarely say this but your case is quite specific regarding the testing and timing and most specifically you won the lottery on the free testing so I would add that to the mix on weighing up how important the test results are to you.)

Nothing is stopping you testing negative and still going gluten-free but my thoughts are you shouldmake themost of the free test andnot compromise it???

Welcome to the board btw :D

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      5

      Related issues

    3. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Going for upper endoscopy today

    4. - Russ H replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Guinness, can you drink it?

    5. - Scott Adams replied to Borky's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten food test strips


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,270
    • Most Online (within 30 mins)
      7,748

    Hope2024
    Newest Member
    Hope2024
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
    • Russ H
      There are several blogs where people test different beers using commercially available gluten testing kits. Guinness definitely tests positive for gluten. Something to be mindful of is that in some regions, foodstuffs containing less than 20 ppm gluten can be sold as 'gluten free'. However, due to the volume involved, a UK pint of beer at 19 ppm would contain more gluten than the generally accepted as safe daily limit of 10 mg. I have seen gluten-free beers testing at between "undetectable" and 5-10 ppm. I have also seen a report of a positive home test on Daura Damm, which is sold as gluten-free beer - the manufacturer did not respond to the tester's query.
    • Scott Adams
      Welcome to the forum! Do you mean this article, and if so, I don't think these are available yet.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.