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

No Symptoms But Please Bend Over Backwards Hosts!


GFAnnie

Recommended Posts

GFAnnie Explorer

I know there are 1000 posts about this in varying forms but here we go - my family is making their first road trip to visit family and stay with them post celiac diagnosis. My MIL has asked virtually no questions about our diet or food prep and she's usually a question asker.  My husband feels sheepish about saying much, other than, yes, food needs to be gluten free, because here's the thing... we were an odd bunch to be diagnosed because myself, my three year old and my one year old were basically symptomless.  As it turns out, I have DH, so now I know what those annyoing rashes were all about, but I still have them, even though I've been gluten free since late January. My three year old had no symptoms but his growth might have been a little slow.  And my one year old was also probably having issues with weight gain. But how do you tell an host about all of the special considerations they need to make when I don't have the "we'll be sick all weekend" line that most can use? I fear that if we did tell her all the special considerations and she didn't follow them she'd see that we ate her food and were fine so the whole celiac thing is silly.  You know?  In a way I wish I would get horribly sick so she could SEE the effect of gluten, but if anything, I guess my rash might get a little worse  a few days after we get home.  Not sure anyone can help me with this.  Maybe I  just needed to vent!  I know the best solution would have been to prepare all of our food and bring it but I just did not have time for anything like that.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

She is family and the grandmother of your grandchildren. You need to sit down and have a heart-to -heart and really explain your needs. It may help to show a copy of the test results.

I usually get off the plane and hit the grocery store purchasing some gluten-free goodies, cereal and fruit and veggies and all the others items I will need during my stay. Now my mom recognizes brands and will stock up which is nice.

Pack a few things that you will need to prepare food. I go often enough to keep a bin full of kitchen tools that I store there.

I hope this helps!

BlessedMommy Rising Star

Well, first of all you DO have a severe reaction to gluten. It's just not one that can be measured by getting visibly sick. Villi damage can lead to cancer and other difficulties. And if you're celiac, then each and every time you get glutened, you're getting damaged, regardless of the amount of symptoms. Perhaps sharing literature with celiac on family would help them to understand that "no symptoms does not equal no problems."

 

2ndly, I would avoid having other people prepare your food as much as possible. If you have little time, there's casseroles that can be thrown together in 5 minutes. I can give you a recipe for my tater tot taco bake. It's delicious and fast to throw to together and you could use a disposable foil pan.

 

If you don't have time to cook, I would strongly suggest just buying some gluten free frozen entrees and heating them up in the microwave. It's a little pricey but it's better than getting glutened. That way you won't be setting a precedent for your host that they are allowed to cook for you, because it's hard to start one way and then switch later on.

 

It is very, very difficult to prepare gluten free food in a gluten filled kitchen. Most people can't do it without some education.

 

Also, you could do ready made stuff for breakfast. I like to bring Kind brand gluten free granola on road trips along with a shelf stable container of non-dairy milk. Along with fruit and eggs, it makes a good breakfast.

 

GL!

mamaw Community Regular

You need  to make  time  for  your  health  & your  kids....that  is  the  most  important  thing in this  world.... Can't  be  any   ifs, ands  or  buts......

I  agree  to take  gluten-free food  with you  then  you can  explain  to  your  MIL that  you  wasn't  sure  she  would  have  any gluten-free  food since they do not  have  celiac....At  that  time  would be  a  good  chance  for  a gluten-free  discussion....take  some  literature  for  her as well.... Going  to the  grocery store  after  you arrive  for gluten-free  food... if  you plan  on dining  out  do the  research  &  find  restaurants  that  have  a gluten-free  menu in the  area...You  are the one  who needs  to be  prepared  for  yourself  & the kids.... yes, it  would  be great  if  she  would  jump  into  the  gluten-free  diet  but  that  doesn't  always  happen....

I  think that  is  what  I miss  at  times  is  someone  else  caring  for  me  &  the other  three  who are gluten-free with celiac...it  always  falls  on me  to take  care  of  us  four.... I  cart  gluten-free  food  to  every holiday.....

JosieToo Explorer

No symptoms doesn't mean no damage. It's up to you to be an advocate for yourself and your children. You need to clearly provide guidelines for her. Make it easy - if she's not willing to buy new cutting boards, etc. (my parents and in-laws keep a box of kitchen-ware especially for me), then bring your own. My husband and I have a "portable kitchen" box that we take with us when going to stay with others, on car vacations, etc.

BlessedMommy Rising Star

JosieToo, would you mind sharing what you put in your box and what type of container you carry it in?

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

      Have I got coeliac disease

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    4. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Have I got coeliac disease

    5. - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

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

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
×
×
  • 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.