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. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    2. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    3. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    4. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    5. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748
    Heather8280
    Newest Member
    Heather8280
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.