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Friends And Family Don't Understand


Gluten free kitchen

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Gluten free kitchen Newbie

I thought that the diagnosis was the cure all, but now I know it was just the pebble that started the avalanche. I have been VERY good with my gluten free LIFESTYLE! (Otherwise, it's not pretty).

I am having problems eating out at restaurants and family/friend gatherings. I am not sure if my kitchen is ultra sterilized or if the cross contamination is not regarded, but I feel very isolated in my own home.

My friends make fun of the taste and flavor of my foods, but I have yet to get the guts to stand up for myself. I am just wondering if people have the same issues. I didn't ask for this and would never wish this isolation on anyone....

:) Teri


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dksart Apprentice

Yes.

I am so jealous whenever people post about how their husband threw out all the bread to keep a completely Gluten-free kitchen or how their kids support them.

My family thinks they are doing OK, but still make grilled cheese in my Gluten-free specific pans or use my colander because they say they will wash it and I'm just crazy for thinking that one little speck of gluten can get me. They think it's alright to wipe their toast crumbs off the counter and put that towel back on the rack.

I finally got them to stop double dipping in the butter, jam, mayo or peanut butter. They know what will make me sick, and don't want to hurt me, but sometimes they are a little lax when it comes to cc issues.

gfpaperdoll Rookie

GlutenFreeKitchen, your isolation is my heaven. I love my all gluten-free kitchen. Summon up the courage to speak up for yourself. Just take your own food with you when you go places. I did it for years before I even knew about gluten, because of all my allergies. Other people with allergies have to do this also, not just the gluten avoiders! :)

Have a topic of conversation ready & change the subject when it is directed towards your food. Really these days it should not even be a topic, what with people eating vegan, raw, no carb, no eggs, no this & no that. Most of us have a varied diet, it is just that we cannot eat fast food! & what a blessing that is!!!!

Try to start thinking of your kitchen in good terms & not put in the limitations.

YoloGx Rookie

Not to contradict, but I think going gluten free plus also having to avoid a host of other allergens does make it a lot more difficult if not almost impossible to eat out. Having an allergy to carrots does not make me react if there is a speck of carrot around if you get my drift. I could live with that and my nut allergies, fermented food intolerance, nightshade family and citrus reactions, sugar intolerance etc. Even gluten thought of as an allergy was OK. But now entirely off all gluten I react like others to the smallest trace amount like the vinegar or some invisible whatever. It makes going out to eat not fun at all unless I just alternatively bring my own.

The most difficult part is when people try to honor me. For birthdays now either I make the cake etc. or I just go do something different--though I got caught recently since my date wanted to take me out to dinner. I chose a restaurant which I thought had gluten-free food but as it turned out it wasn't gluten-free enough for me and I was miserable the next day. If I do this again I will go to some big chain known for their gluten-free dishes and still insist on talking with them thoroughly to remind them of the protocol.

The first date thing is really still pretty tricky, since even tea can be a problem if made with a server's gluteny hands. These days I plan on just bringing my thermos and hope no one really notices or cares.

Any other suggestions?

Bea

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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