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

Celiac It Is


ArPlasma

Recommended Posts

ArPlasma Rookie

After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.

It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.

Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Absolutely...we were extremely happy to finally have a diagnosis.  It is a very good feeling to realize we can improve our health by changing the foods we eat rather than more invasive medical treatments or medications!

 

Congratulations on the completion of a tough process...glad to hear your little one is improving...keep up the great work :)

StephanieL Enthusiast

I'm glad you have answers! Now onto working with the school to get the accommodations he needs!  And YES, it's okay to be glad you have answers!!

1desperateladysaved Proficient

Glad you got definitive answers.  Happy to hear that it seems to be helping!

 

D

africanqueen99 Contributor

Great job, Mom! Look, he's already healing and starting his journey. :)

Keep it up and stay on top of the school!

ArPlasma Rookie

Thanks everyone! Next on the list is working on the 504 plan for school.

WinterSong Community Regular

It is AMAZING to have a diagnosis. I considered it a huge blessing to finally have found out what was wrong and that there was something I could do about it. And so many people struggle with getting a diagnosis in the first place. So yes, be happy! Congratulations! You are now ready to help change his life for the better :)


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



Celiac.com Sponsor (A8-M):



africanqueen99 Contributor

:)

 

I just went through the 504 process and it was SO MUCH EASIER than I expected.  Man, I was expecting a fight and going all "mama bear" on them and it was really an easy and engaging process.

nvsmom Community Regular

:) I hope he continues to feel better.  Good catch on that, Mom!

ArPlasma Rookie

Thanks everyone! The school has been great so far, they had already passed a note to the teachers before diagnostic but now the nurse made it known to everyone that it is official. We are still writing the 504. We took a break this week- end, I finally gottorelax a bit and of course I got sick. I always catch something( cold), after being stressed out for too long. :)

DS's school teachers as well as karate instructor have been commenting on his increased responsiveness.

Cara in Boston Enthusiast

Glad you have answers.  Be sure to get everyone else in the family tested.

ArPlasma Rookie

Glad you have answers.  Be sure to get everyone else in the family tested.

We did. DD tested negative on all. DS2 tested negative on all as well( very close to positive on TTG- IgA and has a skin rash similar to what DS1 at the same age), DH tested positive on ttgs and just had his endo, waiting for results. His GI told him that given blood tests and family history, even if the biopsy is negative for him it most likely means that they have not found damage yet. So everyone is going gluten-free in the house! DD can eat gluten at school and outside, DS2 not at school yet so he will be gluten-free for now.

  • 2 weeks later...
cmc811 Apprentice

After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.

It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.

Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.

Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want :)

 

If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?

ArPlasma Rookie

Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want :)

 

If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?

Nope don't mind, everything was positive:

tTG- IgG:46, tTG-IgA >100, EMA 1:160

Archived

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


  • 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

    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      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
      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
      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
×
×
  • 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.