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Anyone Else Ever Feel Like Banging Your Head Against The Wall?


rez

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rez Apprentice

Gluten, casein, soy, chocolate, aaaaaaaaahhhhh!!!!! I have no idea what else to look for or do. I feel like once I strike all the offending foods from my son's diet that there will be nothing left. To try to eliminate all the canker sore/stomach ache/acid reflux causing foods is nearly impossible. I'm normally a great cook and I have ruined two cakes, a batch of muffins, and 3 loaves of banana bread in the past two days. I want to run away and be a kid again with no responsibilities and no worries!!! Does anyone else ever feel like giving up? I have good days and bad ones, but right now I'm in a slump. I'm affraid we're going to have to look deeper than gluten. His tummy is not 100% and the cankers are better, but not completely gone. Nuts and strawberries were also on the offending foods list. I feel there's no where or no one to turn to. No doctor to help or make him better. He called crying from school today with a terrible stomach ache. Sorry for the rant. :(


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Guhlia Rising Star
Gluten, casein, soy, chocolate, aaaaaaaaahhhhh!!!!! I have no idea what else to look for or do. I feel like once I strike all the offending foods from my son's diet that there will be nothing left. To try to eliminate all the canker sore/stomach ache/acid reflux causing foods is nearly impossible. I'm normally a great cook and I have ruined two cakes, a batch of muffins, and 3 loaves of banana bread in the past two days. I want to run away and be a kid again with no responsibilities and no worries!!! Does anyone else ever feel like giving up? I have good days and bad ones, but right now I'm in a slump. I'm affraid we're going to have to look deeper than gluten. His tummy is not 100% and the cankers are better, but not completely gone. Nuts and strawberries were also on the offending foods list. I feel there's no where or no one to turn to. No doctor to help or make him better. He called crying from school today with a terrible stomach ache. Sorry for the rant. :(

How long has your son been gluten free? It can take up to two years for symptoms (such as stomach ache and canker sores) to go away completely, especially if he has done a lot of damage to his intestines. Are you sure that all gluten sources have been eliminated (ie: soaps, lotions, play dough, paints, glue, hair product, soaps at school, lotions at school, caregivers lotions and soaps, etc). I'm sure you already covered all this, but those are all easy places to slip up.

I would highly recommend, if you haven't already, getting a good gluten free cookbook like Incredible Edible Gluten Free Foods for Kids by Shari L Sanderson. The recipes in there are gluten free and most are easily made casein free as well. I love that book for my family. Perhaps you would have more success if you were trying gluten free baking that were a little easier than the bread items, like cookies or mini muffins (mini is key as gluten free baked goods tend to not cook inside in my experience). Or, try some naturally gluten free recipes to give you a little sense of success before tackling the harder recipes... Have you done the 3 ingredient PB cookie recipe? It's fabulous and sure to be a success. It's also naturally gluten and casein free. You'll need to make sure your PB is soy-free.

ryebaby0 Enthusiast

Goodness yes, I think we all feel overwhelmed and miserable from time to time! And of course, this time of year is one big food-o-rama for the "mainstream" world, and here I am, stockpilling frozen entrees to take to potlucks so my guys can sit and gaze at the "buffet of doom" (my son's favorite invented term) and hating the world of people who start ANY sentence with "just a little" or "I know this is safe".

... has your son been tested for vitamin deficiencies? Mine takes a med (unrelated to celiac disease) that has as a side effect mouth sores, and the doctor recommended we give him a multi with lots of folate to combat those. If he is really deficient in zinc, folate, B vitamins or some other things, a simple multi won't be enough and he might need a simple prescription for supplements. Just an idea, it's awful to hang out there not knowing what else to try.

...your son is lucky you are a great cook. You can do this! Give yourself a break, and keep throwing out food. It's part of learning what works. I write notes in my cookbooks, and keep trying. (Mine is also egg allergic -- try making muffins without an egg!). When all else fails, come here and rant, because we all really do understand :)

joanna

azmom3 Contributor

have you tried food allergy testing yet? It's nice to quickly get an answer to what things you should take out of their diet.

Cheri A Contributor

((HUGS)) ~ You can do this!! We've been gluten-free for a year and I baked many door stops that would break a window or sink or just plain taste disgusting. My dd also has an extensive list of other allergies.

I agree with Guhlia about baking in small pans. We took bread away for a few months so she could "forget" what wheat bread tasted like. And, also because I was throwing away every doorstop I made! Then I read about the smaller pans. I started baking in muffin tins, then graduated to mini-loaf pans and then to the regular loaf pan. The first "success" I had was with banana muffins from www.savorypalate.com. She lived on those for awhile. Just keep trying!!

I am sorry that I don't know much about canker sores.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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