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

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

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

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

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.

  • 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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

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

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.