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

Emma Update

Guest tracey and emma

By Guest tracey and emma
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest tracey and emma
Guest tracey and emma
Posted

Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

i am assuming you mean lymphocytes? that is all that showed in one of my girls biopsies---but she had positive blood work.

christine

lovemyboy Rookie
lovemyboy
Posted
Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

Hi

Our blood work was negative and we took our son off anyway and he has put on lots of weight and seems to be eating alot better. Not sure which type he had though. Sounds like I would keep her on the diet if she has improved that much.

key Contributor
key
Posted

Blood work is not accurate in small children. My son had negative blood work and responded massively to the diet! So if she is doing great, don't listen to what they are telling you. LIsten and look with your own eyes at how well your Emma is doing! Isn't that proof. It was with our son!

Monica

Becky6 Enthusiast
Becky6
Posted

My daughters blood work was neg but she has turned around 100% from being gluten-free since dec 1st.

Nic Collaborator
Nic
Posted

My son also had positive blood work but only showed lymphcytes in biopsy. He has been gluten free for 10 months. I just got done telling my sister on the phone that I think he is getting a bit chubby. Big turn around from last year .

taweavmo3 Enthusiast
taweavmo3
Posted

My two boys (2 and 7) both tested negative, but have responded well to the diet. My youngest was very lactose intolerant before, if he had even traces of dairy he would have diarrhea and awful diaper rashes. Now he's been gluten free for around 6 weeks, and can tolerate all the diary he can eat! I do have a daughter also, 4, who did test positive on both blood work and biopsy.....but now that I've seen the positive results in my boys who tested negative, I don't really put much stock in the current testing for now.

If Emma is thriving.......just keep her on the diet. Don't let doctors tell you to do anything different. I've heard our ped ask why I would "put my kids through that" if they weren't really sick, like it's some sort of cruel punishment. Alot of doctors don't really have a clue what it's like to live gluten-free, it's really not that bad. And there is still LOADS of gluten-free junk the kids can have, so they aren't really deprived of kid friendly food. My 7 year old actually made the choice himself to go on the diet, just based on how much better he felt. That spoke volumes to me!

Take care, and I hope Emma continues to thrive!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

the blood tests are extremely unreliable in children and for the Dr. to tell you that a negative result was 100% accurate is a load of crap.

My daughter's blood test was negative, she did not have the biopsy, but had a miraculous turn around on the gluten-free diet. I am convinced she is Celiac and so was her pediatrician. Trust your instincts that she responds very well to the gluten-free diet and that is all you need to know. Don't listen to those Dr.s that tell you she can't have Celiac because of a blood test. They are just ignorant. Sorry, but it's true. There are sooooo many stories of the blood tests being innacurate in children (and even adults) they can only be 100% IF they are positive for it. Not if they are negative. They can miss the early stages, they aren't trained to look for the early stages. They are trained that Celiac is extremely rare, they will probably NEVER see it in their practice, and they are only trained to look for the final stages of the disease where so much damage has been done to the intestines that the body is not absorbing ANY nutrients. Also, a lot of Dr.s will refuse to even consider Celiac, especially if they already have it in their minds that there is either something else wrong that requires surgery or medication OR they are convinced it's all in the patient's head (or the parent's).

Glad to hear she is doing better. Give it time, keep her 100% gluten-free, and I'm sure you will see some miracles! My daughter is now a thriving happy and healthy soon to be six year old. She does not feel deprived of any goodies or yummy food.

Archived

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

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


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.