Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New To This And Very Overwhelmed


brdbntL

Recommended Posts

brdbntL Rookie
:blink: I don't even know where to begin. We found out last Wed for sure that she has Celiacs. She has no symptoms, we found out because of a standard blood test. I was doing ok with it until I called Dannon today to verify that there product is gluten free. I was very disappointed to find out that I had read the label wrong and missed the natural flavoring. I couldn't even finish the call. I am just frustated and feeling guilty about it. I know there are worse things, but this just stinks. Sorry to be so down, but I needed to do it somewhere. I need to be upbeat and positive for everyone else around here.

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



Celiac.com Sponsor (A8-M):



Guest jhmom

I am sure you are relieved to finally find out what was wrong and how to treat it, I am assuming "she" is your daughter?

Trust me it can be overwhelming at first, you have to read every label you come in contact with and call manufactures to double check the ingredients listed.

THere are a few "gluten free food list" available online. Here is a good one that has "some" gluten-free food: www.glutenfreeinfo.com

I hope this helps and good luck to you.

tarnalberry Community Regular

She can still have yogurt - get plain yogurt (full fat) and add jam or preserves in whatever flavor she likes.

Don't stress too much. It takes some time to learn the diet. You have to create a new habit for yourself, and that takes a while. Think how much better things will be for her with you making this change! :-)

kejohe Apprentice

There was a post in the "Lunch Ideas" forum in this same catagory that stated that the dannon drinkables seemed to be gluten free. Also I think the Cascade fruit juice sweetened yogurt is also gluten-free.

Try not to get too down in the dumps, there are a lot of really good gluten-free products out there, and you might be amazed at what you can do when baking gluten-free. I make most from scratch for my son, but I also buy prepared snacks for him on occasion, and there are some really good and kid-friendly gluten-free things on the market now. Ener-G has some pretzles that I think are just as good as the wheat ones and my son would eat an entire bag at a time if I let him. There is an online company kinnikinnick.com that has some ok breads and doughnuts, even cinnamon rolls! You should check them out, it will at least give you some options. My suggestion is to make a list of whatever you try, and whether or not you liked it, so that you don't buy the same product more than once if it's not good.

Good Luck!

brdbntL Rookie

:D Thanks everyone. I am not really that down. I was just disappointed about the flavored yogurt and rice Krispies. My daughter has never had any symptoms of Celiacs, so it is hard for me to explain why she can't have gluten. She is 3. She is also diabetic. And I just worry about her and how she will handle it when she gets older. Thanks for all the encouragement and info.

Laura

ja1233 Newbie

Hi Laura,

I know exactly how you feel. My daughter was diagnosed with diabetes last January, than in June, after a routine blood test she tested positive for celiac. I was/am very overwhelmed. Like your daughter she has not symptoms. We had our son tested, he is 6, and he tested positive also. He also has no symptoms. Both of my children have grown fine. I am so worried that my son may develop diabetes from untreated celiac that we have been following the diet for both of our children. It is getting a little easier, but I still wish it would end. I can say my daughters blood sugar control has improved, but I am not sure if that is because of the diet or just because we are better at figuring out her body over time.

I have found another site which is also filled with a TON of information. It is Open Original Shared Link. I go on it a few times a day and learn about products, etc.

Take care,

Jodi

brdbntL Rookie

Thanks Jodi,

I am feeling much better now. I am trying new recipes and this board helps. Tons of great info. And Bette Hagman's cookbooks.

Laura


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



Celiac.com Sponsor (A8-M):



Guest shar4

Well, all I can say is don't feel bad. I was so miserable before diagnosis, that I honestly thought I was losing my mind. I started taking anti depressant and it helped, but the diagnosis, and FINALLY finding out that I am not nuts, did a lot more for me than the antidepressants.

Someone else here on the boards (I don't remember where) stated that it is so easy to get used to feeling better, and that is SOOOO true.

As much as I would love to eat that bag of pretzels or other gluten filled food, I know on some level, that it just isn't a smart thing to do. I have days like yesterday, when I just wanted to eat everything in sight, and I did eat Doritos with wheat flour in them, and although I'm not experiencing huge symptoms, I'm almost beating myself up for the slip-up. <_< I would love to eat what I used to eat, but frankly, I feel better. I have more energy, way less gas and bloating, and just generally feel human, again. It's been a long time.

Sorry, I know I get to rambling, but there's always a lot going on and sometimes just letting it out feels good.

Thanks for everyone's patience. :)

Sharon

shula Newbie

:rolleyes:

Hello. My pediatrician thinks my son has celiac (still waiting for bioposy results) and just wondering if anyone's heard this:

My son has just turned two, has terrible eczema since a baby (which if why he was tested originally for allergies) and was always a bad eater. He did not gain much weight the first year of his life. (went from 89th percentile to 8th percentile.)

Also, as a baby had stomachaches that lasted almost a week with a lot of vomiting.

Any links seen?

please reply, I await your thoughts

Shula

Alison Rookie

Shula,

Everything you have mentioned has been linked to celiac disease and/or gluten sensitivity.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,055
    • Most Online (within 30 mins)
      7,748

    malcolmg
    Newest Member
    malcolmg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kathleen JJ
      And yes, of course it's better to know and we will adjust.  It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.   I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up?    And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞
    • StaciField
      I’m 41. You have helped me achieve the goals of finding a way of getting nutrients into my body so I will see how it works for me. Thank you so much.
    • Kathleen JJ
      Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry...
    • cristiana
      Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear.  I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter pylori on this forum.  I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams. Obviously, you won't really know for sure where things stand until you have your meeting with the consultant.  I am sorry that you have to wait, but it will be worth knowing one way or another.  Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health.  But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear. Cristiana  
    • Kathleen JJ
      Hi all, I'm very new at this and 'this' has been quite a rollercoaster ride.   Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on.   On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned.   Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month.    So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered.   However, to everyone's (including the doctor) surprise, he also had these values: Transglutaminase IgA + >128 U/mL Gliadine IgG + 123.0 U/mL    I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope.  Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had.   We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid.   And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this?   I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means...   Kind regards, Kathleen  
×
×
  • Create New...