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

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.

  • 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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.