Celiac and my family

Question

I am at my wits end and absolutely desperate. My 15 yr old daughter is the one who has celiac in our family and was diagnosed only a year ago. With numerous errors and “rookie” mistakes, we have finally gotten pretty good at always checking labels, having a designated GF space food prep space, utensils, cookware, condiments, etc. at home and emphasizing her condition and sever reaction when eating out. Even after all of this, numerous blood tests, colonoscopy, endoscopy, MRI, CT Scans, etc. she STILL suffers from excruciating pain on a daily basis. The pain is in her entire abdomen (upper, lower and both sides), her chest, and her back. She’s lost tons of weight (which I know is to be expected once you’ve gone Gluten Free), but now she’s also weak. As of the past month, she can barely keep anything down because she’s ALWAYS nauseous and has even had to have pain/nausea meds in IV twice. She’s got no strength and her dr has actually put in an order for a wheelchair. She’s so frail that even a gentle hug hurts her, I feel if I hold her hand, it might break. I feel as if I am one step away from a mental breakdown watching my baby suffer like this. My husband tries his best to help, but she depends on me more than anyone. I know that if I am battling the worry, stress and heartbreak of watching her battle this, that it must be a million times harder for her to actually be experiencing it.
Please, please, please, does anyone have any suggestions? Any advice? I feel as if I am watching my daughter wither away before my eyes and I am powerless to stop it.

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Chasity 3 years 20 Answers 562 views 0

Answers ( 20 )

  1. I was going through a lot of these symptoms the throwing up and severe pain for 6 years….the pain is finally gone. I hope y’all find out why this is happening, bc I know her pain and this is a hard life to live

  2. That is terrible. My heart goes out to you. It’s so hard to believe that after all those tests, they can’t find what is wrong with her ?. That has to be so frustrating!

    If she is 100% gf (sounds like she is), she should not still continue to have these problems. Loosing weight is not really “to be expected” (unless maybe she was over weight before diagnosed), so it is possible this is also due to something else ??‍♀️.

    I don’t really have any advise – other than maybe try another doctor – but I wish you & her the best.

  3. How long has she been fully 100% gluten free? Personally I would see another doctor. Sounds like something else is going on. Undiagnosed celiac can cause / disguise other health issues.

  4. Have you contacted the Celiac Center at the University in Chicago? She may have refractory celiac where a gluten free diet doesnt help. They may be able to review her medical records and help her.

  5. Praying for you both 💞 I’m so sorry you have to go through that, I cant imagine how difficult it is

  6. Good Morning Chasity. I am so sorry to hear. I know how she feels. I experienced it many times. I can only share with you my experience but, I did a lot of research when I was diagnosed and found that gluten can be hidden in a lot of things like: spices, condiments, and things containing natural flavorings. I noticed that I had a reaction with chicken. It is very sad to say but, chicken is injected with water, sodium and “natural flavorings”. They say to make it taste better but, (why can’t we just have it in it’s natural state and season it ourselves). I think it’s just to have it weigh more so they can charge more in my option. Also, I found out that with Celiac you can also develop a lactose intolerance. Cutting out dairy as helped me a lot.

  7. This must be so horrible for you and your daughter to go through. I’m glad she’s going for more testing but if they don’t give you answers find another doctor! There’s got to be something more going on besides the celiac disease!

  8. I too have been diagnosed with refractory celiac disease. I have been GF for 7 years. I have figured out that even GF foods, including any GF flour, as well as dairy products and also raw vegetables cause severe abdominal pain for me. Try to eliminate these things from her diet and see if the pain subsides. It takes a very long time to get relief! Hang in there, I have regained some strength and gained a few pounds by being diligent and by not eating outside my home.

  9. I would be frustrated too I’m truly sorry. I don’t have as severe reaction as your daughter or others when I have cross contamination happen. I just get bloated and nausea a little. She take iron pills? May help with energy levels.

  10. My heart goes out to you as a mom! My own experience with celiac and going gf was similar. I sent u a pm.

  11. holistic medicine and and seeking help from a natural path doctor may be an alternative. I have met many people with severe side effects and chronic pain they swear by natural path doctor.

  12. I’m so sorry momma! This breaks my heart to read. Have you reached out to http://www.cureceliacdisease.org
    Or to
    https://celiac.org
    Another thing to consider is that it could be more than just celiac disease. I was diagnosed in 2012 with Celiac Disease. Going gluten and Dairy free changed my life. Gluten free wasn’t enough. Casien is an issue for some celiacs. Also no oatmeal. If those aren’t cutting it then further exploration is needed. I had Endometriosis on my bowels and that was causing severe pain, nausea, vomiting and a bunch of symptoms.

  13. We went through this with our 13 years old daughter,. We did ask to see a different specialist, and she’s a god send. my ENTIRE house is gluten free because I don’t want to take a chance. Feel free to pm me for extra support. We are still seeing a specialist because she’s still in pain, but not as severe as 6 months ago. but at least she is able to go back to school . When I saw your post, it hit home . My thoughts & prayers are with you & your family. Please keep a journal of what she eat & drink, specialist usually finds it helpful.

  14. My daughter has Lyme disease and celiac a terrible combination. Maybe she needs a celiac specialist and a nutritionist. The Lyme disease diet is mostly veggies and supplements. My daughter lostike 20 pounds and is now gaining it back. She just had an MRI for her brain and lots of blood tests 18 to be exact. Keep tract of meds supplements in a journal it is overwhelming. My husband is in denial. I can relate. My journey has been a year too. My daughter was 14 and will be 16 soon. I will be praying for her.

  15. I have Celiac Disease… 24/7 nausea and a loss of 40 lbs. The only meds that got rid of the nausea was amitriptyline… it was a miracle drug for me. I hope your daughter feels better. It is so frustrating.

  16. Is there oats or corn in her diet? Many sensitive celiacs can still react to both. I didn’t start getting healthy until I cut them out 🙂

  17. Get her on supplements if you can. I have my celiac daughter on them and now she can tolerate a small amount of gluten. Today she was eating a donut with her friends at school and had NO REACTION!!!!! The ones I have her on help allergies and the breaking down of difficult food.

  18. This is a long shot but have they checked her ferritin levels. I also have Celiacs and the times I feel the worst is when my iron is low due to non absorption. I get IV iron (venifer). Good luck. Prayers you find an answer.

  19. What about her nutritional deficiencies? They must be severe. Is she getting adequate nutrition via supplements that she can absorb? In her condition she needs serious nutritional therapy. I thought I was just a heartbeat away from death for over two years (and I have plenty on extra padding). It was from being so malnourished. Anti-inflammatory smoothies (almond milk, coconut oil, turmeric/cinnamon), super gentle bone broth soups, these helped me.

  20. Have you tried an Elimination Diet? A lot of times it’s so much more than just gluten that needs to be removed before our bodies can begin to heal.

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