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

  • 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. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
    2. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    3. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    4. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    5. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,350
    • Most Online (within 30 mins)
      7,748
    ElleH
    Newest Member
    ElleH
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.