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

Waiting For Biopsy


Kailynsmom

Recommended Posts

Kailynsmom Apprentice

My two year old daughter has one week to go till biopsy...and she's miserable. She screams all day, restlesss and fussy at night. I know it's only one week, but it seems like forever when you're watching your child suffer...Anybody find anything that helps in the mean time. I gave her Mylanta the other night and she seemed to sleep better.


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

I'm sorry...:( maybe you could ask the pharmasist or the doctor for something to ease the pain for the next week. She should be able to start the diet the day of the biopsy, just make sure you ask the doctor.

celiac3270 Collaborator

At first I was thinking of a number of suggestions to ease it, but then realized that those are for accidental gluten ingestion--when you want the intestine to heal...not for when you're trying to damage it. <_<

Guest nini

Kailyn's mom... I had typed you a long PM the other nite and my computer locked up and I lost it...

I know I'm not in the majority with my thoughts on this, but I feel like I have to say it. If her blood work was positive, what are they trying to determine with the biopsy? she's too little to have accumulated much damage. IMHO a blood test is conclusive enough and the fact that she is miserable waiting another week for this biopsy upsets me. According to I think it was JAMA's papers, the biopsy is NO LONGER THE GOLD STANDARD for diagnosing celiac, especially in children.

Just my .02 cents.

I would forgo the biopsy and go ahead and start the gluten-free diet. If she doesn't get better relatively quickly (several weeks or so) consider looking into other food intolerances or other conditions. If she does start to improve, VIOLA! you have your answer AND your child gets better.

Jnkmnky Collaborator

I agree with nini. Is the biopsy necessary for insurance reasons? Why do you feel you need it at this point? My son's dr told me the biopsy wasn't necessary DUE to the amazing results of the diet. He was three, and another thing the dr told me was that the risks of a biopsy are small, *perforated intestines was one possibility, but the risks were way too large in light of how well my son was doing on the gluten-free diet. You know with all the recent acknowledment of celiac disease being a real problem, I'm leery of drs who want to use every new possible celiac as a "teaching tool". Make sure your dr isn't lining up Med students to watch the procedure. I'm generally a suspicious person.. <_<

julie5914 Contributor

I am 25, and they not require biopsy for me. Blood work was strongly positive and enough. Course they waited a month to tell me that while I thought I was waiting for endoscopy, but oh well. I am happy to be gluten-free now. Maybe you can find a source for your doc to convince them to give your daughter diagnosis without the trouble of biopsy...

frenchiemama Collaborator

I'm going to have to go with some of the others here. If her bloodwork was positive and she's sick and miserable, why not just start her on the diet and forgo the biopsy? I was diagnosed through bloodwork ( I don't know the numbers but everything came back a "strong positive"). My doc and I discussed it and decided that we would skip the biopsy unless I wasn't improving after a couple of months. It has now been almost 3 months and I feel really good and my DH has cleared up (except for a couple accidental glutenings). To me that is enough evidence and I don't feel that I need a biopsy to tell me anything.


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



Celiac.com Sponsor (A8-M):



Kailynsmom Apprentice

Thanks for all the replies...but actually her bloodwork was negative (a 3- ya'll probably understand that better than I do) The dr. said that's good, but considering her age and that her IgA was only 32 (really low) that he wanted to do the biopsy. He said that a low Iga can skew the TTg ( i think that's right - the celiac blood test) just as age can.

I am new to all of this, and the only family members with it are on my ex-husbands side. We split b/c of his abuse, so needless to say those lines of communication are a little shaky. I did talk to his celiac disease aunt and she said that I should have her tested. Dr said with undigested foul smelling stools, history of amenia, stomach and leg pains, and constantly irritable mood, that she's likely a Celiac.

Ok, so now what's ya'lls take?

Is Mylanta (or Maalox) even gluten-free? Maybe thats not even worth trying, though it did offer a little relief I think.

Jnkmnky Collaborator

Would the biopsy be affected if she went gluten free beginning today? I know my son felt better within four days of being gluten-free and he was three years old. At least she'd begin feeling better. I think if the biopsy results wouldn't be affected by a dietary change NOW, then you should consider that. How fast do vili grow anyway?

Kailynsmom Apprentice

I honestly have no idea how fast villi grow... haha. I did ask the dr at her appt 3 weeks ago if she could go gluten-free before the biopsy and he said "NOOOO!" I really am too new at this whole celiac disease thing to know that. I just now have gotten a general idea of the disease itself (intolerance, not allergy- though Icant say I honestly know the difference.) It's a good thing someone here gave me the safe/unsafe Gluten lists, because I thought I just had to look for "Wheat" or "modified food starch"

Ok, so anybody out there know? How fast do villi grow? And her biopsy is te 20th, if she goes gluten-free today will that mess it up in that little amount of time?

Jnkmnky Collaborator

Here's the thing... She has a family history of celiac disease. She has symptoms that sound like celiac disease. She tested neg, which is common for young Celiacs. Her Neg blood work didn't make the dr say she DOESN'T have celiac disease or need a biopsy. He's actually going to do the biopsy with the neg blood work. Makes it sound like even he knows her neg blood work doesn't rule out celiac disease. She's suffering by your own account. I just don't see the point of continuing a gfull diet. Isn't it also difficult to have flattened villi that prove celiac disease at such a young age? Sometimes you don't get that "proof" of celiac disease, but are diagnosed with a diet change. It's an acceptable dx if all the other puzzle pieces fit.

Kailynsmom Apprentice

Thanks, though it didn't help allay my guilt at all.

No, and bear with me because I'm still researching all of this, he said that there could be several things causing her symptoms. She does have a history of lactose intolerance, perhaps it is more severe than that- an allergy. Maybe it is celiac disease. Or something else. The point of the biopsy is two fold he said- he wants it to check for celiac disease, but she had some issues when she was first born that we thought might be related to her intestines. (She saw him at only 3 mo old- her ped said reflux and colic, but he thought it was more likely intestinal cramping.) He said he wants to make sure that it isn't something else wrong now, that could have also been wrong then. For such a quick, fairly low risk procedure(biopsy), at this point it is worth it if it will give us some answers and help us get her well.

Kailynsmom Apprentice

One more thing, her insurance and some of her assistance that we get will help with cost of gluten-free foods, but dr said his experience has been that the ins wont help without the biopsy. If bio is negative, but diet does help, THEN the ins will help.

Jnkmnky Collaborator

PFft! Mother's have enough guilt. You're doing everything you can do and then asking what more you can do. Sorry if you felt my words suggested you needed MORE! I've got three kids so it's three times the guilt. I'm more frustrated with the process and the dr.

frenchiemama Collaborator

Hm, I do understand about the financial reasons. I used to take pepto (name brand though, I don't trust generics to be gluten-free) when my stomach was upset ie every day. It works about as well as anything else I've tried.

Kailynsmom Apprentice

Why is it that we feel such guilt? Have we ever done something thinking that it would purposely harm our children? It's ridiculous- why do we feel guilty? We do all we can.

Hooray to us mom (and dads)! We love our kids and we do our best...."What do you want from me?!?!?!" (My mom actually yelled that at my sister and I one night, when we complained about the dinner menu! Hahaha)

Guest nini

my daughter's blood work was inconclusive and she DID NOT have a biopsy, but she responded extremely well, almost instantly, to the gluten-free diet.

when she was born she had projectile vomiting, explosive diarrhea, GERD, painful swollen abdomen, and we thought she had lactose intolerance and other allergies because she was breaking out in hives all over her body.

Any of the OTC remedies for cramping, nausea, vomiting, diarrhea didn't work, the prescriptions didn't work... she was miserable, she was anemic, hypoglycmic, underweight and had no muscle tone...

She also has a family history of Celiac. ME. That and her symptoms and her response was enough to dx her. Insurance and medical assistance will have to help if you can get a dx. However, I disagree everything that you have said that this Dr. has said regarding this. I think we need to question our Dr's. I also do not think that the Biopsy is low risk. JMHO of course.

I'm just telling you where I'm coming from so you can take it and run with it, or totally disregard everything I've said. Doesn't matter. I'm just trying to help! :D

julie5914 Contributor

Yeah, from your additional info, it sounds like you do have a decent doctor. It sucks that sometimes you have to wait so long for biopsy. And it seems so much longer with pain and discomfort (whether its you or your child). Check about the insurance to see if it's worth it though. Endoscopy will cost you some percentage, and most insurances "cover" gluten-free treatment by allowing you to sign up for a flexible spending account that you can use to reimburse yourself for not the total price of gluten-free foods, but the difference between the gluten-free food and the regular food. What a pain in the tail to keep all those receipts and comp shop to get the difference, pay for it up front and then get reimbursed. Hopefully your program offers more than that.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748

    judytay080
    Newest Member
    judytay080
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.