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
jayhawkmom
Posted

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
mythreesuns
Posted
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
CarlaB
Posted

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
jayhawkmom
Posted
  • Author

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
Ursa Major
Posted

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
jayhawkmom
Posted
  • Author
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
CarlaB
Posted

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
Ursa Major
Posted

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
jayhawkmom
Posted
  • Author
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
CarlaB
Posted

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
Rachel--24
Posted

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
CarlaB
Posted

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
kbtoyssni
Posted

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
jerseyangel
Posted

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

Guhlia Rising Star
Guhlia
Posted

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
FaithInScienceToo
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,861
    • Most Online (within 30 mins)
      7,748
    Priscilla Buxton
    Newest Member
    Priscilla Buxton
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.