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

All Tests, Except Biopsy, Negative But Going Gluten Free

balmerhon

Recommended Posts

balmerhon Rookie
balmerhon
Posted

I'm waiting for the letter from my son's consultant, but I spoke to his nurse today and everything they tested for has come back negative. DS is at University of Maryland who are great with Celiac and other digestive issues. So I know they are doing the right tests (I hope to have a copy of everything in hand soon).

We don't have an appt until July 6 for a follow up. So I don't know if they will suggest a biopsy but, from what some others here have said, I suspect not.

My son has diarrhea (not always watery, but always very soft). He is off the chart with BMI but ok for height. His weight is almost off the chart.

Aside from that, no other symptoms.

We have started him on a gluten free diet this past Sunday (so only 5 days into it) and there are no changes so far.

How long should I expect before I might see some changes?

Also, DS is very picky. So finding things he'll eat is hard at best. Gluten free is even harder. He also LOVES fruit. So I'm wondering if this is a problem, too. I certainly hate to take away fruit - what's left?! I do try to limit it - he'd eat it all day if I let him!

My aunt is a nurse. She's wondering: if his tests are all negative, does he just need more fiber to bulk things up?

I'm so confused. I'm gonna be even more confused if eliminating gluten doesn't change anything. :(

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

Celiac.com Sponsor (A8-M):


Foxfire62 Newbie
Foxfire62
Posted
I'm waiting for the letter from my son's consultant, but I spoke to his nurse today and everything they tested for has come back negative. DS is at University of Maryland who are great with Celiac and other digestive issues. So I know they are doing the right tests (I hope to have a copy of everything in hand soon).

We don't have an appt until July 6 for a follow up. So I don't know if they will suggest a biopsy but, from what some others here have said, I suspect not.

My son has diarrhea (not always watery, but always very soft). He is off the chart with BMI but ok for height. His weight is almost off the chart.

Aside from that, no other symptoms.

We have started him on a gluten free diet this past Sunday (so only 5 days into it) and there are no changes so far.

How long should I expect before I might see some changes?

Also, DS is very picky. So finding things he'll eat is hard at best. Gluten free is even harder. He also LOVES fruit. So I'm wondering if this is a problem, too. I certainly hate to take away fruit - what's left?! I do try to limit it - he'd eat it all day if I let him!

My aunt is a nurse. She's wondering: if his tests are all negative, does he just need more fiber to bulk things up?

I'm so confused. I'm gonna be even more confused if eliminating gluten doesn't change anything. :(

If biopsy is negative, then more fiber is warranted or maybe check for colitis or crohn's disease; these are also autoimmune disorders that can cause same symptoms.

swalker Newbie
swalker
Posted

Has he been tested for fructose malabsorbtion? It's an easy breath test. One of the main symptoms is usually cramps but it maybe not always? It's getting to be more common all of the time and the love of fruit and D are two of the main symptoms.

Courtnee80 Newbie
Courtnee80
Posted

Your son sounds just like my 6 year old son. I'm not sure what to do anymore. I just started him on a gluten free diet today I'm really hoping it will work. My son had a biopsy done when he was 2 but that and all the follow up test have come up neg. I've tried doing the more fiber thing but that didn't work. I know my sons doctor told me to do the diet for a month and then try reg. food again to see if diarrhea(if it ever went away). My main concern is his slow weight gain only about 1 1/2lbs in the past year and lost about 1/2lb in past 3 months. I hope it works out for your son.

balmerhon Rookie
balmerhon
Posted
  • Author
If biopsy is negative, then more fiber is warranted or maybe check for colitis or crohn's disease; these are also autoimmune disorders that can cause same symptoms.

I'm assuming (and will confirm once I have the paperwork) that they have tested for this. I know they tested for blood in his stool.

Has he been tested for fructose malabsorbtion? It's an easy breath test. One of the main symptoms is usually cramps but it maybe not always? It's getting to be more common all of the time and the love of fruit and D are two of the main symptoms.

No, he hasn't. I'll look into this more. No cramps, but you never know. Thanks!

Your son sounds just like my 6 year old son. I'm not sure what to do anymore. I just started him on a gluten free diet today I'm really hoping it will work. My son had a biopsy done when he was 2 but that and all the follow up test have come up neg. I've tried doing the more fiber thing but that didn't work. I know my sons doctor told me to do the diet for a month and then try reg. food again to see if diarrhea(if it ever went away). My main concern is his slow weight gain only about 1 1/2lbs in the past year and lost about 1/2lb in past 3 months. I hope it works out for your son.

Good luck. Let me know how you do. I'm going to give it two weeks and evaluate from there.

BTW, can I ask how you managed to potty train a child with diarrhea?!

happygirl Collaborator
happygirl
Posted

Even if they do not think gluten is the problem, and his bloodwork is fine, they may choose to do an endoscopy and/or colonoscopy to rule in/out other problems that aren't diagnosed via bloodwork.

Good luck, I hope you find some answers soon.

Courtnee80 Newbie
Courtnee80
Posted

Potty training was messy but since he didn't have diarrhea all the time we managed. I think it took a little longer about 6 months till he stopped having accidents during the day. He still has accidents at night. Its really hard to wake up at 2am and clean up diarrhea off the bathroom floor(so glad he can usually make it there). He gets so upset and I feel so bad for him even though I'm usually not in the best mood. I really try not to blame him because its not his fault. This is one of the reason I'm doing the gluten free diet even though the test have come back neg. I'd try anything at this point its going on 4 1/2 years since it all started. He has been tested for everything. Does your son have any bahavior problems? My son does and the doctor thinks maybe switching his diet will help there as well.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    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

    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      New Celiac Mama in My 30s

      By trents · Posted

      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.