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

Me, Doubting?!


tarnalberry

Recommended Posts

tarnalberry Community Regular

With dairy showing up as a problem in my elimination diet, my mother-in-law asked something along the lines of "So are you still thinking you have to avoid gluten?". Argh! The seed of doubt! Oh no! :D

You might not think that this would cause me the "mental anguish" (I'm being facetious) that it is, but my major test for gluten-intolerance was only ever a dietary challenge. My blood tests were inconclusive. But my dietary challenge was a tablespoon of vital wheat gluten in a cup of yogurt. Oh, the dairy contamination! :rolleyes: Of course, I had been eating yogurt all along back then, so I don't _think_ that was a bit problem.

So... I could go back on gluten for months and repeat the blood test, but I have my doubts that I'd get very firm results after only three months on gluten. Or I could redo my dietary challenge with something a little more obviously just wheat. Which means I currently have a small bag of bulgar (mmm... pure wheat) sitting in my pantry (well wrapped in plastic! :P ) waiting for me to work up the courage, and the decent timing, to test it. I go on travel again next week, so it may well have to be today. But on a holiday?! (My symptoms are never _that bad_, if you know what I mean, so it's not the end of the world, but still...)

I'm torn. I probably will just do the dietary challenge, but... Argh. :blink:


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



Celiac.com Sponsor (A8-M):



ponita Newbie

Tiffany,

Isn't it amazing that things can not be clear cut! Should you ... shouldn't you? What types of sym. did you have prior to your challenge? How quickly do your sym. return if you have anything on your list of foods to avoid? Good luck!

Melissa

tarnalberry Community Regular

Well, I've been eating gluten-free for a year now, so I really haven't had much in the way of gluten any time recently - and no gluten that I can pin my finger on in a year. ;-) My symptoms aren't particularly classic, but not that far off classic either, but I never was very sick, so it really isn't that easy to quantify. To the best of my knowledge, gluten gets me within half an hour, and dairy is almost exactly two hours. But I haven't done a clear test of the gluten, apparently, which is what causes the doubting.

coin-op Newbie

you don't have to do any of that. Fast for 3 days (only water), then drink a litre of milk. You find out quickly enough :) You must be simple and straightforward with the tests - otherwise your complex diet will keep tricking you.

-cass

tarnalberry Community Regular

Fasting for three days is NOT an option. I have hypoglycemic tendencies and fasting for one day puts me down. Additionally, fasting for three days - unless you use a laxative at the beginning - will not move the material already in your intestines out of your system so that you can rule out a response to what is still in your body.

If my body could handle a fast like that, I definitely would have considered it. Well... I guess I did consider it, but I know my own limitations, and it just wasn't a viable route for me. For those who can do it, you're right, it does simplify the experiment.

As noted, I was able to determine that milk was a problem for me anyway, so it worked out in the end.

burdee Enthusiast

Tiffany: It's very likely you are intolerant to gluten AND dairy AND any other major allergens. Try eliminating gluten AND dairy for a while to see how you feel. I wouldn't advise substituting soy for dairy products unless you are sure soy doesn't bother you.

Also ignore comments from doubting MILs who aren't concerned with how food affects THEIR bodies. Everybody has sensitivities to SOME foods, even if they only say they don't LIKE a certain foods. Their 'dislike' is usually based on their discomfort after eating those foods. I'm not sure how often your MIL cooks for you, but some hostesses are irritated by having to consider their guests' food intolerances/allergies when planning their menus. So the food choices you must make to stay healthy seem like a big bother to them. Listen to YOUR body cues and ignore those 'seeds of doubt'.

BURDEE

tarnalberry Community Regular

lol, burdee, no worries about my MIL - she's not "doubting" or "irritated", she was just asking an innocent question. :-) (I have an unusually fabulous set of inlaws. It's MY father we all hate. ;-) )

As I mentioned in the posts on the elimination diet, I did determine that I was sensitive to casein, and have eliminated from my diet since the time of that test. I also tested soy while I was doing the test (of course on a separate day, after a day of being on only very safe foods, given two days before trying something different), and I did not have a reaction to it. The thing here is that - for me - my symptoms are not strong enough for a simple "remove it for a few days" to tell me anything - I HAVE to follow it with a challenge to be able to note the difference. And I did. I checked the other major allergens as well, through this process, and didn't turn up anything else that seemed to bother me. (What I didn't do was _specifically_ test the minor allergens, like watermelon, or strawberries, though I added them back in slowly enough that I would have been able to narrow down the possibilities if a reaction occured fairly well.)

So I've been Gluten-free Casein-free for... what, a month now. Something like that. It hasn't made a huge difference, but I didn't have a huge number of symptoms to start with. I know a lot of people on this board got VERY sick from their intolerances, but I was never that bad. (I'm not saying that's a reason to not look into it, just saying that it makes the process of looking into it a bit trickier to do. ;-) )

We cook for each other whenever we're around for the holidays. In fact, they were great about doing a gluten-free thanksgiving dinner, and I had only been on the diet for a two months. My FIL had a heart attack a while back, so they follow the Ornish diet, and do all their cooking from scratch and read ingredient labels up the wazoo as well. I learned a lot of my healthy cooking tips from her, actually. And they loved what we put together for a gluten-free thanksgiving dinner. And we'll do it again this year. Actually, besides the frozen yogurt we had for dessert, I think the whole meal was CF too. And SF, and PF, and EF. Homecooking is pretty basic stuff. ;-)


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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

OOOOPPPPSSS!! Sorry I missed your 'drift' there. :blink: Similar doubts (about dairy as well as gluten) led me to also do an elimination test and later Enterolab tests. However, my symptoms (excruciating cramping pain plus the bloating and gas) are pretty obvious. But even after eliminating gluten/casein/soy, I still seem 'sensitive' to acidic foods, overly spicy dishes and a few other ingredients. I hope some healing time will lessen that sensitivity, since I've only been at this almost 5 months. Maybe after 6 months I'll start worrying about nagging symptoms ... :unsure:

BURDEE

tarnalberry Community Regular

no problem. "in-laws" can often bring up either very positive, or very negative reactions in a lot of people, and I think we often assume that mother-in-laws in particular, can be mean old bats. ;-) goodness knows there are enough jokes about them that way! ;-) (they are funny jokes, too. ;-) )

yeah, nagging symptoms can be annoying, and the thing I think a lot of us need to be careful about is NOT assuming that EVERYTHING is caused by food. there are some GI symptoms that we can get that really are physiological, and not related to the food we've ingested. (well, it could be related to the fact we ate, but not _what_ we ate.) of course, as we well know, it can also be the food. :-/ it's such a line to walk... :-) (I usually err on the side of assuming it's a specific food. easier that way...)

I remember something being mentioned about acidity on the webmd message boards, but can't quite remember what...

I hope you get relief soon!

jendenise Rookie

Well, I guess you could try gluten-free and Dairy/Lactose free for a month or two and see what happens? I don't think it can do anymore harm. If you want to try, you can go to amys.com and find foods that are both gluten-free and Dairy free, and they actually taste good. Maybe you have celiac disease with a sensitivity to Dairy? Have you seen a nutritionist? Allergy specialist? I'm kinda new so I don't know the background on everyone very well, so sorry if I'm being repetitive. I hope you get well soon though, I understand how painful and frustrating it can be.

tarnalberry Community Regular

:-) As I stated previously, I've been Gluten-free Casein-free since doing the elimination diet - so for at least a month now. My symptoms have never been very severe, so merely removing something from my diet, without doing a challenge afterwards, has not been enough to determine the issues, but the elimination diet I did worked well for telling me what I was sensitive to.

(Neither is an allergy - both are intolerances. I've had a couple full allergy tests, and am under the care of an allergist for my asthma, but both the gluten and dairy are delayed-reaction IgG events, and didn't come up in allergy testing.)

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.