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 Results While My Daughter Suffers


clemrobey

Recommended Posts

clemrobey Newbie

My daughter has had stomach pains since Jan. and out of control tantrums too. Bitibg, pulling hair, throwing furniture. I have had friends tell me to take her to a child psychologist, and her pediatrician said 4 year olds are menapausal! She had her endoscopy yesterday....finally. The GI doctor said he doubts she has celiacs....we will see. I just wnat her to be better! I'm so exhusted for my dauhter and me too!


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, now that she actually had the biopsy, what is stopping you from just putting her on the gluten-free diet right now? Because, no matter if the biopsy turns out to be positive or negative, you ought to give the diet a try anyway.

Both blood work and biopsy are highly unreliable in young children under six, and negative results can NOT rule out celiac disease, no matter what many ignorant doctors (including GIs who should know better) will tell you. In little kids the diet trial is the most reliable test of them all.

One of my granddaughters had terrible temper tantrums and blow-out liquid diarrhea bowel movements from the day my daughter started giving her bread.

Within a day of putting her on the gluten-free diet when she was 15 months old she turned into a little angel (for the most part :rolleyes: ) and became the easygoing kid she used to be once again.

Phyllis28 Apprentice

I agree with Ursa Major there is no reason to wait for results before going gluten free.

celiac-mommy Collaborator

You could always take her off and see what happens. That's what we did with our son and there was an instant change. I could actually take him to the grocery store and have a really great time--never has that happened before in 2.5 years! He's back on gluten before his dr appt next week and he's back to the tantrums, but the intestinal issues haven't returned and his appetite has remained good. Not sure what to think.

Worriedtodeath Enthusiast

I can second that!! My daughter turned into a devil doing things just like yours. Two weeks gluten free she was smiling. 6 weeks later she is a dream. Having suffered for years with chronic pain, I can contest to the fact that pain will make you evil. Do the diet - go ahead and remove dairy as well for the fastest results. Dairy also makes my middle child crazy. He become a screaming whiny crying thing that is out of control. Never noticed it when he was on gluten/dairy. Now it is so obvious!!

when we did the gluten challenge with my daughter it took almost 3 weeks for the gi issue to return. however the attitude was like flicking a switch.

NIght and day difference

Stacie

cruelshoes Enthusiast
She had her endoscopy yesterday....finally. The GI doctor said he doubts she has celiacs....we will see. I just wnat her to be better! I'm so exhusted for my dauhter and me too!

You've made it through the hardest part. Now that she has had the biopsy, there is no reason to continue gluten.

I hope you see positive changes on the gluten-free diet.

clemrobey Newbie

This is the first time I don't feel like the one mom with a crazy child. I feel like she is so sick, but no one will help us. I am definetley starting the gluten-free diet, regardless of the biopsy results. Her GI doctor perscribed AXID which she is taking twice a day and miralax once a day, because she was so constipated. I feel like the AXID is giving her nightmares, and the miralax is just making thigs worse. Anyone with ecperience with these medications?


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I believe that all the treatment she might need is the gluten-free diet, rather than medications. Celiac disease can cause constipation, not just diarrhea. You will need to eliminate dairy as well, at least for a few months, in order for her to heal. Dairy is well known for causing constipation as well. And soy is no good, either.

Rice milk is a good substitute for dairy (not Rice Dream, though, it contains barley malt) to put on cereal, and so is almond milk.

Try giving her prune juice or steamed prunes for the constipation, rather than meds.

ravenwoodglass Mentor
This is the first time I don't feel like the one mom with a crazy child. I feel like she is so sick, but no one will help us. I am definetley starting the gluten-free diet, regardless of the biopsy results. Her GI doctor perscribed AXID which she is taking twice a day and miralax once a day, because she was so constipated. I feel like the AXID is giving her nightmares, and the miralax is just making thigs worse. Anyone with ecperience with these medications?

I would start her on the diet and skip the pills, just my personal opinion here. The diet will most likely take care of any issues within a very short time. If she is having stomach pain and there is no reason not to take pepto bismal, name brand liquid, that may deal with the tummy pains for the days until the diet kicks in.

I am glad you discovered this in her before they started loading her down with mind altering drugs to improve her mood.

Get her on the diet and don't wait or get talked out of it if the biopsy comes back negative. The true test is the diet.

my3apsons Newbie

I agree with everyone else that the diet is a good idea now that she's through all the testing, regardless of results.

My son also deals with horrible constipation, to the point they are considering hospital admission to help him clear it. We went on the diet, after just blood work and added VSL3 ( it's a probiotic that his GI doc wanted), as well as senna. We've only been at this a week and while we've had some improvement, we are still working on it. He is so use to the pain that he has learned to ignore it. We also so a huge change in behavior this past year that wasn't there before. He's 7.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

    3. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

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

      Accuracy of testing concerns

    5. - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

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

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748

    Christie Fassel
    Newest Member
    Christie Fassel
    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

    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
×
×
  • 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.