Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

My Big Fat Negative Biopsy


jayhawkmom

Recommended Posts

jayhawkmom Enthusiast

Got my results, a week earlier than I was told I would. Why? Because it was completely negative. I'm not sure how many samples they took, but they took from my intestines and esophagus (due to scaring) - and everything came back neg -a- tive.

My throat has hurt, constantly, since the biopsy. I thought I had strep, as it's going around my son's school. Wrong. At the ripe age of 36, I have to have my tonsils out. *You have got to be kidding me*

Anyhow, with slightly positive blood tests and a glaring negative biopsy.... I will continue to be gluten-free. I really don't need any more testing. I don't want to spend my hard earned money on Dr. Fine's lab testing to prove that I should not be eating gluten. I just simply won't eat it. My daughter is a Celiac.... I might as well be an honorary one! =)

But I do admit... I am feeling better since I've started taking Prevacid again...and I keep Tums with me at all times. LOL!! I guess the GERD was responsible for more than I was giving it credit for! Sheesh!


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



Celiac.com Sponsor (A8-M):



mythreesuns Contributor
Anyhow, with slightly positive blood tests and a glaring negative biopsy.... I will continue to be gluten-free.

With the slightly positive blood test, why bother with a biopsy anyway? I mean it's good to rule out other conditions, but I wouldn't count on a biopsy for confirmation. There's no other reason your blood test would be positive without you having a reaction to gluten, right?

All the negative biopsy means is that they didn't see any damage in the FEW places they looked, most likely at the upper couple of inches of the small intestine.

I think you're doing the right thing, keep on with the diet whatever the dr tells you.

CarlaB Enthusiast

With the positive blood test, Enterolab would be unnecessary. You already know you have the antibodies. I got Enterolab because both my blood test, which was IgA only, and my biopsy were negative.

jayhawkmom Enthusiast

Well, I'm actually VERY glad I did have the biopsy. My doctor was looking for "other" damage, since I didn't seem to present with "classic" Celiac symptoms. I had NO idea I had GERD, or a hiatal hernia, or scaring in my esophogus!! I knew I had "a slight case of reflux" but it turns out that it's much more severe than I would have thought. So, because of that - I'm better armed to take caution with that, to keep myself from developing further esophogial issues! =)

Ursa Major Collaborator

Kris, if I am not mistaken (and somebody please correct me if I am), the Tums are not gluten-free.

I agree, since your daughter has celiac disease, and your blood test was somewhat positive, you might as well just be gluten-free as well. Don't give up on your tonsils quite yet, they may improve being gluten-free.

jayhawkmom Enthusiast
Kris, if I am not mistaken (and somebody please correct me if I am), the Tums are not gluten-free.

Awww crud! Really????? *running to get my bottle*

TUMS Smoothies - Cocoa & Creme

cocoa powder

corn starch

dextrose (?)

guar gum

magnesium stearate

maltodextrin (??????) <----- i'm always confused with anything with the word "malt" in it

microcrystalline celulose

natural (?) and artificial flavors

silicon dioxide (what the h*ll is that?)

sorbitol (Hmmmm, my doctor said that I should steer clear of that with Gerd, so why is it in TUMS?)

sucrose

Ok.... can ya help me???

I really should have looked FIRST huh??????

CarlaB Enthusiast

From TUMS website:

Does TUMS® contain gluten?

Although we do not use gluten as a filler in TUMS®, there may be trace amounts of gluten in the tablets via ingredients that are supplied by outside vendors.

Sounds like they're gluten-free, but the company does not want to take responsibility for cc from outside suppliers.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, I did a google search and verified that Tums aren't gluten-free, and neither are Rolaids. Sorry about that! But it's better you find out than making yourself sicker with something that's supposed to help.

jayhawkmom Enthusiast
Well, I did a google search and verified that Tums aren't gluten-free, and neither are Rolaids. Sorry about that! But it's better you find out than making yourself sicker with something that's supposed to help.

Offhand, are you familiar with any antacids that ARE gluten-free??

I'm getting ready to head out the door to work, but I surely don't want to continue downing the tums if they aren't gluten-free. Sheesh!

CarlaB Enthusiast

Ursula, I'm curious as to where you found that since the TUMS website basically said they were gluten-free, with, of course, the cya statement that they can't guarantee ingredients that they purchased elsewhere. I'd just like to see the source.

Rachel--24 Collaborator

Yeah...its true about the Tums. They're not gluten free. :(

I agree that the negative biopsy isnt really important....the positive bloodwork was enough for a diagnosis. Biopsies are a hit or miss....not definitive unless they come back positive. A negative cant rule Celiac out...especially with the + bloodwork. With your daughter having Celiac.....that just kind of seals the deal. Glad you're gonna stay gluten-free. :)

Ursula, I'm curious as to where you found that since the TUMS website basically said they were gluten-free, with, of course, the cya statement that they can't guarantee ingredients that they purchased elsewhere. I'd just like to see the source.

Carla,

Ever since I've been on this board people have posted about Tums not being gluten-free. I've never looked into it cuz I dont take Tums but I've never seen anyone posting that they are safe. :unsure:

I know people have gotten sick from them.

CarlaB Enthusiast

I don't take them either, I was just puzzled since they sounded safe from their website. Usually I find out if a product is safe by going to their website, so I was wondering how we were to know!! <_<

kbtoyssni Contributor

I thought regular rolaids were gluten-free? The soft-chews aren't gluten-free, but I was certain that regular ones were. Have to do some research this afternoon on this one...

As for the negative biopsy, if you think you do have celiac, then you're lucky you don't have that much intestinal damage yet. A negative biopsy only means that you caught it before things got really bad.

jerseyangel Proficient

I also thought that Tums were not gluten-free, but that regular Rolaids were? :blink:

Guhlia Rising Star

I thought TUMS were gluten free, just with a CYA statement. I take them all the time and have never gotten sick from them, not even a little bit and I'm usually pretty sensitive. Anyone know of a good, OTC antacid that doesn't taste horrible that IS gluten free?

FaithInScienceToo Contributor

I don't take any of this stuff, but....Found this stuff here:

Open Original Shared Link

Personal and over-the-counter items that

commonly have GLUTEN content

communion wafers lipsticks

face powder hand lotions

body powder toothpaste

Tylenol chap stick

Rolaids envelope glue and stamp glue

aspirin sizing in new garments

AND, also on the looong page of gluten-free diet info:

Calcium Intake. For the celiac, a calcium source may need to be what is available that meets the needs of the individual. This may mean no milk products as an excipient or major ingredient; there is likely to need to be a check on the binder, emulsifier, coloring agent, and any additives as well as gluten-containing ingredients. For most celiacs, the over-the-counter Tums product should not be a choice. Because malabsorption is the primary problem or gatekeeper for the celiac, the physician may recommend that two different preparations be taken: perhaps one in the morning with food; and, a second in the afternoon, about 2 hours before any food intake. In addition, the celiac should choose three to five servings of the calcium-containing foods per week in their dietary regimen.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,128
    • Most Online (within 30 mins)
      7,748

    Susie1967
    Newest Member
    Susie1967
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NoriTori
      @Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.
    • trents
      @NoriTori, "gluten intolerance" is a general term that can refer to either celiac disease or NCGS. NCGS is often referred to as "gluten sensitivity" for short. Though, admittedly, there is still a great deal of inconsistency in the use of terms by the general public.
    • NoriTori
      @trents A gluten intolerance is a real possibility! I never ruled it out, but am keen on finding out the EXACT cause. I'd want testing done again to be sure it's not celiac, or SIBO (which I've considered) or other digestive disorder. Celiac seems the most pertinent considering its implications.
    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
×
×
  • Create New...