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

Going For Biopsy

danesmom

Recommended Posts

danesmom Newbie
danesmom
Posted

Hi, I'm new to this site. My son, Dane, is 12 months old. For the last month he has had extreme diaherra. Blood results are pointing toward celiac disease. His biopsy is scheduled for Monday morning to confirm and chech his villi. I'm scared and overwhelmed with everything I've researched. I've emailed the local celiac support group but have not received a response yet. If any one can tell me what to expect or where to find excellent advice I would really appreciate it all.

I've read about cross contamination- is this really as bad as it sounds? My husband and I have decided that if the biopsy does confirm celiac disease that we will live on the same diet as Dane to avoid any mishaps. Currently he is barely eating, and what he does eat comes right out. He is on Neocate One + but hates it but will drink 4 oz's at most. We also tried Neocate Jr and he absolultely refuses it. He has lost 2 pounds in 5 days.

I would be grateful for any advice, info, links, ANYTHING!

I'm scared and feel so helpless.

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

I do not know what an endoscopy would be like for such a little one. For me they put an IV in and gave me "versed". This drug puts you in a twilight sleep, I was awake enough to follow directions from the nurse/doctor but DO NOT remember a thing.

Good luck to you and your little one!

DLayman Apprentice
DLayman
Posted

We just went through a biopsy with our son in January. It went fine. We did it at a childrens hospital. Ask as many questions that you need to to feel comfortable. Keep a brave face on for your little guy before hand it will help him alot to see you positive. The proceedure should take only about a half an hour, they should put him under completely for it. They do tend to wake up cranky after such a short time under.. I know ours did.. we didn't see him right away as they kept us out a little longer because he was a little wild when he woke up, when we got back there he was sleeping, but he woke up after a bit and perked up pretty quickly..

I chose to think of it this way.. hey think of all the times you can't get that little guy to take a nap.. well hey you will want the anestesiologist to come over every afternoon after this.. ;) easy nap time!!! Ok i'm a little weird.. but it sure helped me from loosing it.. I suprisingly got through tear free..

All kidding aside he should be fine.. and I would advise you to go with the gluten-free diet even if the biopsy comes out negative or even questionable.. with blood work pointing in that direction if there is no damage in there yet you can prevent that damage from ever occuring! And that is a good thing!

Denise

ashlees-mom Rookie
ashlees-mom
Posted

My daughter just had her biopsy on St Patricks day. She is 4-1/2, so she is older than your little guy, but it might help to know that she doesn't even think she went to sleep. She does remember the poke on her hand, but tells us it didn't hurt as much as getting her blood drawn becuase of the special cream they put on her. She was crying when she woke up, so once we got to our room I just held her and sang to her to calm her down. She doesn't remember me singing to her either, so that made me feel better. We had everything ready to go gluten free as soon as the biopsy was over and she could eat again. We didn't want to waste those couple days while we waited for results, and I am glad we didn't. We have seen some results, but not as much as I had hoped for. I know it is hard to put your baby through this, but he can start geting better soon! Also, try and have some support for you and your husband if possible. Both sets of grandparents came down, and it really helped us, plus it gave Ashlee something that was good about the day.

Archived

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

Go to topic listing

  • 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. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

    2. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    3. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    4. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    5. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,304
    • Most Online (within 30 mins)
      7,748
    Lynette Eve Lord
    Newest Member
    Lynette Eve Lord
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.