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It Is Offical!

Nikki'smom

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Nikki'smom Apprentice
Nikki'smom
Posted

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D

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EBsMom Apprentice
EBsMom
Posted

I'm glad you have some answers! Good luck getting started with the diet. We're in month 4 and it's starting to seem like second nature now! :-)

Rho

Griffin's Mama Newbie
Griffin's Mama
Posted

Congrats on finding out ! I know that must be a huge relief to know what is wrong. i truly hope that things get easier for you . Good Luck!

ShayBraMom Apprentice
ShayBraMom
Posted

I'm so sorry to hear about the Diagnosis but I'm also very happy for you that you finally know! Now you guys cabn concentrate on avoiding what feed the "enemy". Years ago I knew something wasn't right with my son but I couldn't put the finger on it!For two years I fought to have an EEG getting done. When it was finallly done it did turn out that I was right, he did have some form of Seizuredisorder. I still remember the feeling I had, I was so relieved to find that I wasn't imagining this and also to know that now we could get him better, but also kind of sad at the same time, knowing that in fact they did find somethig which meant to me that my boy wans't all ok- so weird to feel all of the opposites.

Big hugs and congrats, as you know it takes in average a lot of people 10 yrsa. to get diagnosed since Celiac has so many faces!

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D

mftnchn Explorer
mftnchn
Posted

Good news to confirm what the issue is so you know how to address it. The doc sounds great, seems like he needs to be cloned all across the country!!

Nikki'smom Apprentice
Nikki'smom
Posted
  • Author

Thanks every one!

The dr called with the 'ofical offical ' results and the biopsy came back as we knew it would. Thakfully I prepared myself and the rest of my family including my dd so yesterday was pretty good for a start!

ShayBraMon, I turely believe in a mother's intuition! Mom (and dad's ;) have it there is no doubt!

I went to her school yesterday but the whole staff was in meetings. The secratery was there so I left my letter and lists for the nurse with her. She said the nurse should call me back today. I figured if I don't hear from her by 10am or so I will give her a call. I really want this all settled before school starts on Tuesday. I want to make sure every one is on board. I know her teacher was great about the possibility so now that is it a fact i want to work out a game plan so to speak with her.

My head is spinning already between school starting and both kids in soccer, my 5 year old son in karate, and Nikki in tumble/cheer. Then add the fact that both kids are in different schools (the kindergarten is in a seperate school), then add to it learning all of the Celiac stuff I feel like I am going miss something important like pick up a kid form an activity! LOL

So please bare with me if I have some silly stupid questions!

mother2gf3 Newbie
mother2gf3
Posted

hey I know the relief you are feeling, to know what the problem is . I have 4 children 3 with celiac confirmed with blood and biopsy, my 6 year old was diagnosed the end of may, my 4 year old in june and my 2 year old in august so we are new to this also. My son the 6 year old was so sick for so long he was vomiting daily, he was extremly underweight, pale, lack of energy and a huge distended belly, he went thru so many tests and drs appointments, when we found out the biggest weight lifted off my shoulders because, even though its a huge lifestyle change, I now know what we are fighting. My son has gained almost 10 pounds and has grown a whole inch since finding out, It seems like I have a whole new happier, healthier kid now. What a change. good luck to ya.

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Nikki'smom Apprentice
Nikki'smom
Posted
  • Author

Yes I would Love to be able to clon my dr! I wish I could!

mother2gf3, OMG your poor little one! I am thrilled to hear he is doing so much better though that is wonderful!

IT just breaks my heart knowing all these little ones are hurting! I am VERY bnlessed that my dd is so asymptomatic. Yes she does get tummy aches and is tiny (48lbs at 7)but for the most part she is active into sports and always on the go and never let this stop her. i am anticipating some issues once she is gluten-free for a few months because I am sure by accident she will get glutened and i am expecting it to be worse becaue she never showed the pain before. Hopefully I am very wrong though!

buffettbride Enthusiast
buffettbride
Posted

It's kind of odd to congratulate you, but it is so nice to have a diagnosis--especially when so little damage had been done and you know just what to do to keep it from progressing.

Soon it will become second nature to do the gluten-free thing and even with a largely asymptomatic child, you might even notice some changes for the better.

Good luck!

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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