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

Could My Daughter Have Celiac? Constant Hunger

e&j0304

Recommended Posts

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Well, we just got back from Ella's ped. office.

I am discouraged right now because her doctor did not seem to think she has celiac and did not want to test her for it. I guess since she doesn't have the classic symptoms (vomiting, diarrhea, etc.) then she probaby doesn't have it? Also, Ella has grown slowly, but it seems that she should be SO much bigger given the volume of food that she eats. Seems as though she must have a good metabolism...

Her doctor agreed to send her to a GI doctor at a university hospital here. This is not a pediatric GI, but is supposedly well-known. It will probably be 2 months before we get in with him and then we can see if he will test her.

At this point, i'm not sure what to think. I guess maybe I was hoping that we would have some answers and we could start doing something for her now. I almost just want to say "forget it" to the doctors and just put her on a gluten-free diet to see what happens. I know that will affect future testing, but I'm not sure I care. If we see improvement, isn't that all that matters??

Anyway, thank you all for your advice and support.

Shannon

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

Celiac.com Sponsor (A8-M):


Guest taweavmo3
Guest taweavmo3
Posted

Oh no! Poor Ella, and poor you! The doctor is clearly misinformed when it comes to celiac disease, as many are. Not all children have vomiting and diarrhea. My daughter didn't, she only had one stool a day and NEVER vomited. But, on biopsy, she had significant damage.

What tipped me off the most that something was not right were my daughter's moods. She was so irritable, it got to the point where we really couldn't take her anywhere. I couldn't even take a shower w/out her screaming outside the shower door waiting for me to get out. It affected our whole family. But, I think it was hard for the ped to understand how truly difficult life was for us on a daily basis.

Don't give up! You will find answers, it will just take finding the right doctor to listen to you. I'm terrible at being pushy, but you may have to be to get the test. I really don't understand why doctors are so hesitant to run the celiac panel. It's just a blood test for crying out loud! It's not as if you are asking them to do a lumbar puncture or something.

I don't think the doctors realize how they are messing with a child's entire future when they delay a diagnosis. Not all celiac disease kids experience developmental delays, but it does happen. My daughter is very behind for her age, and now we are in the process of navigating our way through the whole special ed process. This most likely could all have been prevented with early detection of celiac disease.

I think you are on the right track thinking that it's celiac disease, keep following your instincts until you get some answers!

Merika Contributor
Merika
Posted

Hi Shannon,

Ouch! Call the gi guy repeatedly until you get in. And while you're at it, ask your friend's for ped referrals and call them to get in. Be pushy. You are your daughter's only advocate. My mother and I would never have been diagnosed if she hadn't done all the research to find celiac, been insistant that the doc test her, and for that matter see a specialist no one referred her to. She is the queen of pushy when it comes to docs :)

Your doc is wrong about the symptoms. She does not need all them (or even any of them) to be suffering from celiac.

Tamara, many docs are very hesitant to run tests. It is the sad outcome of our healthcare system. They are financially penalized by most insurance companies if they run "too many" tests and make "too many" referrals. So unless a doc is 100% positive his referral/test is necessary, he often will refuse to run it.

This is where it pays to be pushy, or find another doc who is either not subject to these penalties (ie, doesn't take insurance....) or is somewhat unusual.

Shannon, if you push, you should be able to get a test within a week. Get creative. My midwife ran the test for my dh (We could have tried elsewhere, it was just most convenient to do there, and dh didn't like the specialist he saw.)

The test you can even order for yourself from www.promethius.com (I think - it should be Promethius Labs in San Diego). You want the 5 panel celiac test. It comes in a tiny box. Bring it to the doc. They do the blood draw, spin it, and send it off in the prepaid packaging. Very simple and costs you $290 + the office visit. You can then send it to your insurance if you want. Take it to your gyn, your allergist, anyone you have repoir (sp?) with who has the facilities and can do blood draw on a child.

Good luck, and remember when it comes to your dd's well being, pushy is good :)

Merika

e&j0304 Enthusiast
e&j0304
Posted
  • Author

I have some good news. Ella will be going to see the GI doctor in 2 weeks on Aug. 2nd. That is a lot sooner than I thought she would get it so we're happy about that. Maybe now we can get some answers.

What should I expect from this visit? Should I expect that they will run some tests on her while we're there. This doctor is in another city so I'm hoping they do as much that day as they can.

Just wanted to give an update. Thanks again for all the help!

Shannon

P.S. Ella's pediatrician was questioning the correlation between celiac disease and food obsessions or overeating. He said that celiacs may *think* about eating, but don't actually eat a lot like Ella does. Ella's food obsessions and overeating have been labeled as "hyperphasia". Her ped. was not sure if others with celiac disease were people who obsessed about food and actually ate a lot of it or if they just obsessed about it. What do you guys think about that?

Guest taweavmo3
Guest taweavmo3
Posted

But how does the pediatrician explain her failure to gain weight with her insatiable appetite? If she didn't have a malabsorption disorder, she should really be packing on the pounds I would think.

And, the comment that celiacs think about eating alot but don't, that's not accurate either. I know my little girl ate all the time, and I've heard other parents say the same thing. It was only after going on the diet that she finally ate normal portions, and I think that feeling "full" was a new thing for her.

My 15 month old, who I believe has celiac disease also, can eat a TON. For breakfast one morning he had two bananas, a nutra-grain bar and a waffle. He is always hungry, and gets very irritable if I don't feed him immediately after he wakes up in the morning or after a nap. He can definately put away and adult sized meal.

Anyway, I'll quit rambling. I'm so glad you have the GI appt. soon, and you don't have to wait ages for some answers!

Jnkmnky Collaborator
Jnkmnky
Posted

Doctor's don't know everything. We're brainwashed to believe they do, though. Thank God for the internet! We can all be specialist in what ails us or our children! ;);)

Archived

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

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

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.