Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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


rez

Recommended Posts

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. :(


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



Celiac.com Sponsor (A8-M):



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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    5. - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,052
    • Most Online (within 30 mins)
      7,748

    Diane Dutra
    Newest Member
    Diane Dutra
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...