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

Help For A Family Of New Intolerances


ndw3363

Recommended Posts

ndw3363 Contributor

One of the guys I work with just had his 10yr old daughter tested and it turns out she is intolerant to just about everything.  Now I don't always think that the bloodtests for sensitivities are 100% accurate, but he was told they need to cut out gluten, eggs, dairy, peanuts (and other tree nuts), and most likely soy.  This leaves them with very little IMO to eat.  I'm gluten free and semi-dairy free so I'm only a little bit of help to him.  I gave him this web address as a starting off point, but right now, their heads are swimming.  He has 3 other kids and they are trying to decide if they whole family should follow some of the guidelines or just the daughter.  They are seeing a dietician soon, but thought maybe I could get some other great resources from this group - this is always my first stop for questions since you all are so super helpful all the time.  I'm really just looking for ideas on what a 10yr old can eat with all this.

 

Sidenote - he didn't say whether or not the Dr. did a celiac panel.  I told him about it (had never heard of celiac disease before) and asked that he call the Dr prior to pulling gluten out of her diet.  The sheer number of intolerances suggests to me that there is something else going on.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

One of the guys I work with just had his 10yr old daughter tested and it turns out she is intolerant to just about everything.  Now I don't always think that the bloodtests for sensitivities are 100% accurate, but he was told they need to cut out gluten, eggs, dairy, peanuts (and other tree nuts), and most likely soy.  This leaves them with very little IMO to eat.  I'm gluten free and semi-dairy free so I'm only a little bit of help to him.  I gave him this web address as a starting off point, but right now, their heads are swimming.  He has 3 other kids and they are trying to decide if they whole family should follow some of the guidelines or just the daughter.  They are seeing a dietician soon, but thought maybe I could get some other great resources from this group - this is always my first stop for questions since you all are so super helpful all the time.  I'm really just looking for ideas on what a 10yr old can eat with all this.

 

Sidenote - he didn't say whether or not the Dr. did a celiac panel.  I told him about it (had never heard of celiac disease before) and asked that he call the Dr prior to pulling gluten out of her diet.  The sheer number of intolerances suggests to me that there is something else going on.

Meat, veggies, fruit, rice, quinoa, corn is a short list. You can do quite a bit with those.

Adalaide Mentor

From experience I can say that with gluten and soy together that it is pretty restrictive, nearly to the point of whole foods or ridiculously expensive crap no one can afford. Dairy adds a whole other layer to that because what isn't whey in?

 

I'm going to agree though that there is quite a lot you can do with meat, vegetables and the available grains. You can suggest coconut aminos as a substitute for soy sauce for stir fries and after that I really can't think of any reason she'll be lacking.

 

And yes, I would prod him to push for that celiac panel and follow up endoscopy quickly. We all know the test won't be accurate if she's already gluten free so there probably isn't a whole lot of time for them to mess around with that and if they can get the blood draw done immediately that would be super.

StephanieL Enthusiast

Intolerance testing leaves much to be desired.

 

Why did they test to begin with?

 

That diet is what we have followed with a few more. It's about cooking a lot at home but its manageable for sure.  Again, without knowing why they tested though, I would bet a few/most of them aren't an issue really.

ndw3363 Contributor

She has had behavioral problems for years - at one point he said they had her on Abilify, but decided that was a bit strong for a 9 yr old.  They are coming at this from a good place - don't continue to mask the problem...get to the root of it.  She has been very tired and almost depressed for awhile, which is why they had the tests done.  They went through standard pediatrician who specializes in dietary restrictions (which is why I was surprised she didn't run a celiac panel or blood vitamin/mineral tests).  Apparently this Dr is very in demand (they had the blood draw in August and couldn't get a follow up appt to go over results until this past Friday 11/8 - crazy!!)  I of course did not discount the Dr's opinion, but I did explain to him that a lot of this information is subjective and it would be in their best interest to get the celiac panel done now before they make radical changes to her diet (that way they can have the other kids tested if it comes back positive as well).  I was trying my best to help with recipes and food ideas, but I'm allowed dairy (in small amounts) and all my good recipes contain something she can't have.  Mostly need lunch ideas to take to school - poor kid.

StephanieL Enthusiast

Desperate parents will try anything, I know :(  I just hate to see people restricting diets so much without a clear reason and scientific testing first to rule things out.  It's hard to get people to comply with these diets with no back up (from the patient to the families to the schools).  
 

 

Soy is going to be the big one. If they do decide to pull everything, that would be the one I would try to add back first as it will open up a lot.  Hummus with veggies, soups and stuff like that would be where I would start with for lunches.

Juliebove Rising Star

My daughter had all of those intolerances and more.  There is plenty to eat.  Can use coconut oil instead of butter.  Can pop pocorn in it.  Can eat sunseed butter on a rice cake, rice crackers, corn tortilla, gluten-free bread, etc.  There are all kinds of fruit.  Meat.  Now there is great dairy free and soy free cheeses.  Daiya is one such brand.  In a restaurant, safe choices would be a hamburger patty,fruit, plain baked potato, sometimes fries.  In a Mexican restaurant, beans, rice and corn tortillas are usually safe.  Often the meat is safe but you have to ask.  Have to concentrate on what can be eaten and not on what can't.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    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

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.