I was diagnosed as Celiac via blood & biopsy

Question

I was diagnosed as Celiac via blood & biopsy several months ago.
When the nurse informed me of the results and verified that Celiac was indeed the problem, I asked how seriously I needed to take this.
I asked if I had to be 100% gluten-free 100% of the time? If I need to make sure none of my medications or supplements have any trace of gluten? If I need to make certain that make-up and other body products are gluten-free? Like, just HOW fanatical do I need to be?
She shrugged her shoulders and said, “Eh, it’s really just up to you.”
Seemed an odd response and made it sound as though having Celiac was really no big deal. So I didn’t make a big deal out of it either and continued on as I had been, more or less.
Are there “levels” to this?
Like, some of us can use gluten-containing beauty products and others can’t? Some of us are okay eating something that may be cross-contaminated and others aren’t?
Why would she shrug it off and say it’s up to me, as though it wouldn’t really matter one way or the other?
Anyone have any thoughts on this?
Are there levels of severity or is all celiac created equal and I need to make sure NO gluten-containing products come into contact with me, inside AND outside?

in progress 0
Andrea 3 years 24 Answers 501 views 0

Answers ( 24 )

  1. Yes you have to be gf inside and out 100% of the time. Cross contamination is very real and you must be very careful. A spec of a crumb could get you really sick.

  2. I personally would mention her response to the the doctor. That’s a ridiculous way for a nurse to reply to a question.

  3. It is up to you really- some people react differently to different things since it is such a wacky disease. I for one can not have gluten in eye products. I hope you take it seriously and do what you think is best and limit all gluten if that is what was prescribed by Dr. the best you can. Good luck,

  4. My doctor told me that I had celiac and the possible side effects. However he told me it was to me to decide how to follow along.

  5. Thank you for the responses. I had been in such a fog trying to get my thyroid levels where they need to be, (a tug of war back and forth between hypo and hyper due to hashi and graves), so it was difficult to focus on and research as thoroughly as I usually do, let alone change my whole lifestyle to GF. \nSince the nurse acted as though it was no big deal either way, I put this on the back burner. With thyroid levels in check, I feel much more clear-headed and upon joining this group and reading posts, it felt as though perhaps this celiac is far more serious than it felt I was led to believe. \nAnd boy is there a LOT to learn and be aware of! So I sincerely appreciate the input from all of you! 🤗

  6. Some good resources that may be helpful (maybe would be helpful for that nurse too…? ?):

    Both the University of Chicago and Columbia University have information/gift basket (books and other goodies) they send out if you sign up. Tons of information.

    http://www.cureceliacdisease.org/educational_essentials_kit/

    https://celiacdiseasecenter.columbia.edu/groups/join-our-mailing-list (they sent mine after signing up for the mailing list)

    Also recommend watching this: https://vimeo.com/193239516?ref=fb-share

  7. Hi , Andrea Lea.Welcome to a nice group of people who will support you as you learn.

  8. well if depends on you if you want to be healthy if you want to be sick have cross contaminated you might not feel it but your damaging your body

  9. Ok, I’ve been Celiac for 13 years now, this is what I KNOW, 100% of the time 100% of what you PUT IN and ON YOUR MOUTH has got to gluten free. The rest, as far as shampoos, makeup, lotions, etc. is relative. I have NEVER in 13 years, had a reaction to touching gluten containing things. I even used an entire bottle of all natural shampoo that contained wheat with ZERO reaction. But apparently some people can not. So see how it is for you and adjust accordingly. But don’t think for a second that you can eat “a little” gluten and not do any damage…youd be very wrong.

  10. There are levels of how you REACT – my 2 sisters and I all have Celiac, and I react to all medication and skin products with gluten, one sister can take some meds with trace amounts of gluten, the other barely reacts to anything – that she notices. But you never know what it is doing to your whole body. My sister and I struggled with infertility for years. I’ve had cancer and tooth issues. I wasn’t diagnosed until my 20s. I’m 100% gluten free now, but when I first was diagnosed the docs acted the same way- eat “less” gluten was the real advice. I would cheat every so often for the first two years or so. It wasn’t damaging my gut, but other issues were happening. My long term GI told me go cold turkey and never look back in order to restore damage and prevent long term illness and complications that were maybe already a danger to me. I did and am so glad. I noticed changes in headaches, skin quality, memory, energy level on top of stomach pain and other bathroom issues. \n\nSo if you’re actually a Celiac, yes, be 100% gluten free. I’d be happy to share some brands of skin care if needed. \n\nGood luck on your new journey! It’s not so bad, I promise!

  11. There are so many people that work in the medical field but they do not understand celiac. I had to go to the hospital a few times for an emergency I realized one time when I could not leave and had to stay over night that I really needed to bring my own food. Very sad.

  12. I had a similar experience with my doctor! When my results came back he told me I needed to go 90% gf ??? Thankfully I had already been doing my research and knew he was wrong and I’ve been 100% gf since. You can do it, but you’ll definitely go through all the stages of grief. I don’t even think about it now. Once you’ve been “glutened” after going gf, it’s very easy to say no to anything that will make you sick. You’ve got this!!

  13. I dont eat gluten free because i cant afford to but i suffer

  14. Ok, I didn’t change pots or pans. I sanded my cutting boards, got my own toaster and have my own PB, Nutella, butter dish. We try for squeeze bottles of everything else. Eat a load of veggies, fruit and meat. I buy my own pizzas at Costco (the Oggi ones are bananas good) but otherwise we are slowly converting the house to gf. We are super careful about cross contamination. My oldest shreiks to her brother if she finds crumbs on the counter. Lol. My little warrior princess. My kids watched me suffer a couple weeks back after I was accidentally glutened and they got it. So they want a gf house so Mom does not get sick. My husband is amazing with his label reading. He’s terrified of natural flavours and colours…”we don’t know where those come from…nope that says Caramel” I love him to death. All this to say…I don’t know what is in my makeup, I’ve not checked. I switched my shampoo as the Aveda has wheat protein in it but body washes and butters are body shop and safe. I went to the salon this week and she was mortified that she didn’t wipe out the sink or wash the cape separate…I was fine. I seem to be blessed that if I don’t ingest I’m okay. I use Colgate toothpaste like before diagnosis, I use bath and body works handsoap…I did ask and the honey ones have gluten, so those only go in the kids bathroom. It’s an adjustment but not a death sentence. I keep gf premade protein shakes for being on the go. Kind bars in my purse. But I’ve never gone hungry. Take it seriously, this is your health and your life. Do you really want to feel sick? No. Do you have to eat Paleo and Keto…No. but it is your job to educate yourself, and the healthcare industry seems wildly uneducated on the subject. Get a good pharmacist and get to know your butcher. My local Sobeys butcher knows which meats I can and cannot buy due to fillers…that said didn’t think to ask before last week and haven’t had an issue. Kirkland meats are good the butcher advised me. It’s such a learning curve. Youll get it. It’s serious so take it seriously and this is an awesome group to ask questions (but read the label first 😉 )

  15. Yes, interested!

  16. once you have spent tons of money funding what products are gluten free and what aren’t… you will probably go organic, non organic..back to organic.. And spend tons more money just to go back to basics.. but think of it like s treasure hunt for things you like that are GF
    winners, Marshalls and home sense have loads of GF goodies!

  17. and just remember the basics when you think of gluten.. if it was available in the stone age than it’s probably gluten free!!!! lol

  18. It may take you a little while to completely overhaul everything, I have been GF due to CD for 20 years. Lots more stuff available now. I use all GF from makeup to toothpaste to shampoo to lotion 😊

  19. It does depend on your individual bodily reaction to gluten. Her response was probably more related to the fact that it’s not immediately life-threatening. As in, if you consume it, it’s not gonna kill you immediately. It does damage your colon though, and *lead to* other health problems. There is a higher risk of GI cancers. I’m sure you’ve read all about it. But nurses in an outpatient setting see all kinds of patients everyday. Including patients on deaths door. So she was probably coming from that perspective. She should have told you to ask your doctor for advice on that.

  20. So Andrea, I’m 50 years old. I was diagnosed with CD when I was in my early 30’s. I did not take my condition seriously. I was mostly gluten free, but would still eat gluten occasionally because my reactions were mild.
    Now that I’m older, my body feels like it’s 70. I’m in pain all the time and can hardly move. The small amounts of gluten that I have ingested repeatedly and consistently over the years have done irreversible damage. I have so much inflammation in my body that the pain is almost unbearable. I have arthritis, osteoporosis, ulcerative colitis just to name a few. And gluten causes inflammation which is the underlying culprit in many diseases. It’s not worth it! I wish someone would have told me when I was younger, what I know now from experience. It’s not about how gluten makes you feel now, it’s about the damage it does to your body over time. I stay away from gluten now, but I will always be in pain from the damage I’ve caused myself over the years. Stay away from gluten, in everything! Be vigilant. You’re future self will thank you.

  21. I had one blood test that was negative from the homeopath doctor and one positive from my family md. Now iam waiting for results from an endoscopy. So confusing. My nephews blood work was negative but his endoscopy was positive.

  22. I am CD 100%…..but I’ve had no problems with lotion, shampoo…it cannot be absorbed thru the skin. My Blood work only diagnosed me as CD. I changed all the food in my kitchen…we are also sugar free cause my hubby is…he cannot tell the difference in my cooking GF…..I’m so thankful, he’s so careful when we do out to eat he takes me where I can find gf food to eat.

Leave an answer

Browse
Browse

Captcha Click on image to update the captcha .