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

New Here W/some Questions

jacksmom

Recommended Posts

jacksmom Newbie
jacksmom
Posted

Hi there,

I've got a few questions or concerns... I'm 35yrs old & all my life my mother has told me that I had Celiac as a child... I was never put on a gluten-free diet or anything.. I just always knew I had it as a child but never researched it.. a little history on me.. I have had recurrent pneumonia & bronchial problems since I was 5yrs old, which now my 5yr old son has.. he just had his 5th pneumonia this week.. the second time in a month.. he is being seen by a pulmonary specialist next month.. what brought me to this site was doing a search for "recurrent pneumonia in children" on a search engine... it struck me that I was told I had Celiac... after talking to a few people they commented that it's not something you get rid of.. you should be on a strict diet.. hhhmmm... here's the thing.. I don't have GI probs and I am overweight... I do get bone pain, confusion etc...

Well, my son usually has loose stools and in the past few months has complained of an itchy back.. I've noticed small bumps all over & have had him checked.. they said they were hive like.. he has also had excema since infancy.

I'm not sure if any of this is related.. another similarity that we have is that we are both carriers of the Cystic Fibrosis gene.. he was tested as a baby , having seen something on his blood tests at birth.. so my husband & I were tested.. I am a carrier.. my first cousin has CF ... well, I guess I'm just looking for a word of advice.. I'm going to print out all the info for his doctor appt.. at this time I'm more concerned for him & his little body.. he is very thin.. for a while we were having his weight checked.. he has been gaining, but not as much weight as you would think by the amount of food consumed.

So, please, if anyone has had experience w/any of the above, please let me know... I may be way off base, but you never know... my pedi as a child may have misdiagnosed me also.. did they know of the gluten-free diet back in the early 70's?

Thanks for listening!

:rolleyes:

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

Celiac.com Sponsor (A8-M):


3boyzmom Newbie
3boyzmom
Posted

I'm new to this as well, I also have a 3 1/2 year old boy.

In response to did they know about Celiac's 20 - 30 years ago, I had a conversation with a girlfriend whose 34 year old brother was labeled a Celiac baby... they put him on a special formula and told the family he would grow out of it. He has always been thin, prone to illness and has had stomache problems. He just figured it was just the way he was...

They knew about it, but the same as today, they apparantly didn't know enough.

I would ask your doctor to check into screening for Celiac's for both you and your son... it would help to answer a lot of questions.

There is a lab, although controversial you can do a search on this board to find recent discussions on them, Enterolab, that does a series of test... it may or may not be covered by your insurance.

I myself am in the process of having my son tested...

Hope others have more helful info for you...

Just wanted you to know you are not alone! :D

jacksmom Newbie
jacksmom
Posted
  • Author

Thanks so much for replying.. good luck with your son & keep me posted. I'll do the same.. we're going thurs to his follow up for the pneumonia & I'll mention it then.. thanks! :)

Laura Apprentice
Laura
Posted

Jacksmom,

It sounds like both you and your son should be tested for celiac disease and/or go on a gluten-free diet. Definitely when your son goes to the doctor, ask about testing for celiac. I know how hard it can be to be assertive with a doctor, so if it helps, print out a lot of information and bring it with you, or write down your questions in advance so you don't get flustered and forget them.

As for you not having GI problems and being overweight, that can happen. I was overweight by a little until I stopped eating gluten, and there was nothing I could do to lose the weight. Not working out five days a week, not eating less. Stopped eating gluten and lost 10 pounds, even though I eat all sorts of fattening gluten-free things. And I wouldn't have said I had GI problems, certainly didn't have constant diarrhea or anything like lots of people do, although I have found that since I've been gluten-free I've had a lot less bloating and gas and so on so it turns out that not having GI problems is a relative thing.

Some people get joint pain, I think, and mental effects like anxiety, depression, and "fogginess" so your confusion might fit in there.

Going gluten-free is a big hassle, it's true, but if your son could be healthy, and you could feel lots better than you do, it could be SO worth it.

jacksmom Newbie
jacksmom
Posted
  • Author

Thanks so much for replying... every bit of advice helps.. I'll keep everyone posted after thursdays appt :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.