Jump to content

  • 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):

Jessica's Progress

Loobiej

Recommended Posts

Loobiej Rookie
Loobiej
Posted

Hi All

Well Jessica has now been gluten free for 9 weeks, the first couple of weeks were up and down and then we had a really bad week after that we saw a big improvement, the dietitican at about 7 weeks wanted us to try her with barley to see how she reacted so she had oatabix and barley juice for about 4 days and then we had to stop she was in alot of pain and we had many toilet visits, we then went back on gluten free and shes now a different child, school have said shes applying herself more in class and shes more alert and we are seeing this at home, Jessica would go to the toilet about 4 to 6 times a day, she now goes twice a day. She has much more energy and her excezma or DH hasnt flared up, Anyway we had our consultant appointment yesterday and he was very pleased with Jessicas progress, her weight has stayed the same since september but the good thing is shes not lost any while been gluten-free, he talked more about Jessicas stool results and told us they were alot of malabsorption detected which is a sign of celiac, Jes also had an xray he said this was ok they were no sign of leaky gut or anything else, he wanted to do this just to rule other things out. He checked Jessica skin and noticed the improvement too, we were sure that he was going to ask for us to put Jessica on wheat again for him then to go ahead with the endoscopy, but he said hes diagnosing her we celiac without this for the moment as shes had such a good response to the diet and the fact that her symptons have cleared up and the results he had from her stools were enough, he did say that in 4 years time if jessica wanted to go back on wheat we would try it and then maybe do the endoscopy but he said for the moment Jessica needs to be stable and he needs her to put on weight, he said shes not srong enough at the moment.

I feel happy that we now have a diagnosis and we will get the support but most importanly we can continue to get Jessica better. Can i ask if this seems right to you all?

He said these were his points to why hes diagnosing her

Positive stool tests

Positive response to gluten-free Diet and weight static

Symptons cleared up

Grandparent has celiac

Thanks for listening xx

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Hug your doctor for me!

That he won't needlessly make her do something that you have already demonstrated makes her feel worse is FABULOUS! Smart guy!

mushroom Proficient
mushroom
Posted

Yay, I am so glad to hear this. You must be thrilled to see her getting healthy again!

ravenwoodglass Mentor
ravenwoodglass
Posted

He sounds like a great doctor. The one thing I wouldn't do is put her back on gluten in the future. Doctors used to think that kids would outgrow celiac because it can be a long time after they go back on gluten before the gut symptoms appear. Meanwhile the antibodies can attack other organs. IMHO it is not worth the risk. Glad to hear she is doing so much better.

Loobiej Rookie
Loobiej
Posted
  • Author

Hi All

Thank you for your responses we are thrilled but completley shocked that he diagnosed Friday, when we started the gluten-free diet after a few weeks Jessica was having a really tough time i was calling him and we didnt really get a response, but apparently he was away, as soon as he was back he helped loads and had Jes in for an xray as she had a lot of blood in her stools and from there hes been Fab,im really happy with him.

We had got it into our heads he was going to put her back on wheat to do further testing, and we were ready to fight our corner,but he completley shocked us.

I dont know how i feel if im honest im happy,sad and numb,i think deep down we knew it was celiac but we were hoping it would just be the allergy, I just dont know why i feel so upset.shouldnt i be happy?

I think it doesnt help that as a child my mum was diagnosed with celiac but they didnt diagnose till late and she was very ill with it, it terrifies me.

we are seeing the dietician again on Thursday now shes been diagnosed, what should we expect? last time we went she just gave us details on foods etc.

Thanks

xx

ravenwoodglass Mentor
ravenwoodglass
Posted

I think it doesnt help that as a child my mum was diagnosed with celiac but they didnt diagnose till late and she was very ill with it, it terrifies me.

I know it's scarey when our children are ill but now that she has been diagnosed and will be on the diet her problems should go away and she will avoid many more down the road. Do make sure that the rest of the family is at least tested and sometimes making the whole home gluten free can be helpful.

Sometimes the hardest part is getting the diagnosis, for some of us it takes years, but getting used to the lifestyle can be difficult also. You will get through it and do ask any questions you need to and feel free to vent if needed.

salexander421 Enthusiast
salexander421
Posted

So glad you have a great doctor! And so glad your daughter is doing good too! :) Have you posted about him on the doctors thread/forum? This might help others in your area who are in need of a good doctor. Also, I'm sure you've thought about this already but have you done any testing for yourself? If your mom and daughter both have celiac there's a chance you could have it too.

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

Celiac.com Sponsor (A8-M):


Loobiej Rookie
Loobiej
Posted
  • Author

Hi, no we havent thought much about is been tested yet, we only found out a few days ago about Jessica.

Its been going for a few years our first visit to the Drs about it was April 2009, but our GP didnt refer us to the consultant until September 2010 but from there its gone pretty quick.

I have a little boy who is four he does go to the toilet quite regular but he doesnt have any other symptons at the moment, would myself and him get tested by blood test?

My mum also has Chrones disease which worrys me, she was diagnosed with this 10 years after coeliac.

I will put details of my doctor in the forum no problem xx

mushroom Proficient
mushroom
Posted

The one thing you should not do is compare what happened to your poor mother with what Jessica's life is going to be. She is one of the lucky ones, and having her diagnosed early will help her avoid all the repercussions of undiagnosed celiac that your mother suffered through. So long as she remains gluten free she should make a full recovery and lead a totally normal (albeit gluten free) life. :D

salexander421 Enthusiast
salexander421
Posted

I would definitely consider getting both yourself and your son tested, just ask for a full celiac panel.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it...
    2. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint...
    4. Joseph01
      - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

      This is way past due for your post. I have Celiac and have been recovering for more than a year. Doing well. Used Essential oil to day to fry some chicken. Read the label all good. Then ate some chicken. Here comes the gluten reaction. I haven't had a gluten reaction since year. I am angry. I have been so careful with this crap and don't wan't any...
    5. ThomasA55
      - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      We Keep Getting Glutened With Vegetable Oil

      By Joseph01 · Posted

      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...