advertisement

  1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Back but with a new diagnosis!

Discussion in 'Parents of Children with Type 1' started by 22jules, Jun 28, 2017.

  1. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906
    Its been awhile since I have been on here---we are 10 1/2 years into this and my daughter just finished up her freshman year in college! The last year or so she has been having lots of symptoms--starting with severe mood changes, upset stomach, hair loss, bloated belly, etc. She also was a very late bloomer which always confused me since I was really young and my older daughter was average age for puberty. Ran tons of tests but nothing would show up. Fast forward to this year--her symptoms have been increasing and she almost always has pain in her legs every night along with looking very pale. We ran her blood work in advance of her endo appointment and her celiac test came back positive.

    ttg igA transglutaminase >100 and IgA immunoglobulin A 78 (range is 80-up)

    so.....we are probably looking at celiac

    Endo referred us to a gastro and we are waiting on getting an appointment but I have a question for those that have been through this---I'm assuming that with her results the next step will be a biopsy. If she has a positive biopsy does the gastro help with the celiac diagnosis or are you kind of on your own figuring out how to go gluten free? Does the endo help at all?

    I'm kind of used to the endo with all the diabetes help that they gave with educating us and I am under the assumption that a celiac diagnosis is another steep learning curve. Any help or sharing of your experiences would be great!

    Thanks!
     
  2. kim5798

    kim5798 Approved members

    Joined:
    May 7, 2009
    Messages:
    724

    after our biopsy, I think they referred us to a dietician? its been a while...but for the most part, we were on our own. They basically tell you if in doubt, don't eat it. It is so much easier now than it was years ago. The biggest thing is try & eat foods in their natural whole state, then you don't have to worry about added gluten. Fruits, veggies, meats are all good. You watch out for seasonings & now there are so many more bread options. Truthfully, Dani doesn't eat that much bread. She does corn tortillas & does eat some gluten free waffles. The big thing is eating out, you have to be careful, but you learn what you can eat & how it affects you if you get gluten by accident. Some seasonings can be an issue. I would be happy to share some info with you.

    She was telling me that she was talking to someone this past weekend regarding diabetes & celiac. She said, I told them diabetes is hard, but for her celiac is harder because she doesn't remember not being diabetic, she remembers not having celiac. She said, " I remember how soft pretzels taste!"
     
  3. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906

    Thanks for responding!

    I have heard that celiac is harder than diabetes as well-but at this point I guess I just want to know what has been going on and have her feel better. Also worried about sending her back to school- she is going to be living in a suite next year and on a meal plan. I noticed your daughter is in college- how has that worked?

    And do you think that with her test results that we are definitely looking at a diagnosis?
     
  4. Cheetah-cub

    Cheetah-cub Approved members

    Joined:
    Feb 18, 2014
    Messages:
    240
    "I'm assuming that with her results the next step will be a biopsy. If she has a positive biopsy does the gastro help with the celiac diagnosis or are you kind of on your own figuring out how to go gluten free? Does the endo help at all?"

    Yes, with a positive blood test, the next step will be to schedule an endoscopy (biopsy), your daughter will need to continue to eat normal (consume gluten) until the test result. If the biopsy confirms damages to her small intestine, then she will be diagnosed with celiac.

    We were immediately referred to a dietician, who were not helpful at all. She was very negative and down on the gluten free foods, and I didn't like having her telling my then 10 year old daughter that her food options will be inferior. Even though this meeting was over 3 years ago, I still remember what a horrible consultation that was.

    We have a G.I. doctor for celiac disease. Our GI doctor was young and inexperienced. Our endo is not that involved with our celiac disease. However, whenever our endo orders blood tests, I would ask her to order a celiac blood test for that same blood draw, (to see if our TTG has come down). Our endo always ordered the celiac blood tests for us. So, we don't see our G.I. doctor at all anymore.

    We learned to adopt to the gluten-free lifestyle on our own. There are lots of information out there, plus forums like this. There is a celiac forum also full of information. There is a learning curve, but just like diabetes, after a while, you will know what you are doing. Eating gluten free does add to the expense. You need to give your college kid more money.

    The good thing is, if she does have celiac, going on a gluten free diet should have her feel better and back to her normal self.
     
  5. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    We were also referred to a dietitian, as well as to a class for families new to GF. It wasn't that helpful for us either. I'd already spent weeks obsessively reading about GF, and the class relied on very dated handouts that didn't even reflect recent labeling changes. Every clinic is different, though, so I hope that you have a better experience!

    I've also found over the years that when we ask the diabetes clinic dietitian about celiac, she punts and says that isn't her area, and then we get the same from the GI clinic if we ask their dietitian any thing D-related. It's very frustrating. Celiac is a disease where you absolutely have to be self-educated, probably even more than T1d.

    These days, we see the GI doc every year to 18 months for follow up, but we will probably space that out more because our dd's celiac antibodies are now in the normal range and everything is going well. I have adult family members who are celiac who don't see the GI at all anymore.

    As for college, be aware that ADA/504 require dining hall accommodations for celiac. See here: https://www.ada.gov/lesley_university_sa.htm Of course, even if the law is on your side, there's also a trust issue about how well the dining hall can implement, but assuming it's a large university, the dining hall has probably worked this out with other celiac students.

    Good luck!! The good news is that your daughter will hopefully feel much better very soon. Going GF made a world of difference for my daughter in pretty short order.
     
  6. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906

    Thank you! I'm sure we will figure it out and I'm looking forward to her feeling better but I,was so hoping for a thyroid diagnosis!! My older daughter has Hashimoto's and the idea of taking a pill versus a whole lifestyle change seems much more appealing- you know? I just feel like the diabetes is enough! But I know I'm preaching to the choir....

    Thanks for the response!
     
  7. kim5798

    kim5798 Approved members

    Joined:
    May 7, 2009
    Messages:
    724
    My daughter did spend more $ on things like fresh berries & gluten free flour tortillas, but overall the dining hall at Utah was pretty good. They have a section that is allergen free, so no gluten, nuts, seafood, wheat, corn. They have a grill where she could always get a chicken breast. They have salad bar & fruits & gluten free bread in the dining hall.

    As someone else said, do not go gluten free until biopsy shows positive. Once diagnosed, if you want pointers on what things are worth the $ & which aren't, myself and others can give our 2cents. If you need/want something specific we can help direct you & maybe save you some $. For the most part, its a lot easier these days. Many people eat sandwiches as lettuce wrap vs a bun; a lot more places have gluten free options when eating out.

    Dani did not have many real symptoms before diagnosis. She did notice afterward that the random headaches & stomachaches she had complained of seemed to not exist anymore. Overall she felt good. It was like she didn't realize she felt bad before.
     
  8. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906
    Thanks! I will definitely reach out for help-- really overwhelmed looking at everything and will take all the help we can get! We have an initial appointment with the gastro next week and hopefully can get the biopsy scheduled soon after so we can just move forward.
     
  9. Cheetah-cub

    Cheetah-cub Approved members

    Joined:
    Feb 18, 2014
    Messages:
    240
    By the way, you should ask the G.I. to schedule the earliest possible appt of the day for the endoscopy. With the endoscopy, the patient can not eat or even drink for many hours before the procedure. I remember that we can not even give juice some hours before the procedure. So, you can not go low! We were told that if we had to treat a low close the the appt, then we would have to reschedule the appt.

    Our endo did coordinate this procedure with our G.I., we were given the very first appt of the day, I remembered that we got to the hospital around 6AM. And our endo looked at my daugther's bg pattern, and adjusted our insulin dosages to run her a bit higher , so she won't go low. (We were only 3 months into our diabetes diagnoses at that time), I remembered feeding her a high protein, low carb dinner, and staying up most of the night to check her numbers the night before procedure.

    The procedure itself was only about 15 minutes long, it was pretty simple, we went home about an hour or so after.
     
  10. Ali

    Ali Approved members

    Joined:
    Aug 1, 2006
    Messages:
    2,190
    Ahh Cheetah-cub, your post hit me. I am an adult but it is so true trying to go into a procedure without food or a sugar treatment for 12 hours is really hard... Wish all the Drs had a clue as to how to help the Type One's do this, throughout their lives:) Have been doing this on my own for numerous surgeries over 40 plus years and other tests and it is hard. Sounds like you had a great Endo, mine was always missing in action for my procedures and the team on call was clueless, I woke up from surgery more than once without my pump site attached and no record of when removed etc.
     
  11. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906
    I am so hoping that it won't be too hard to get an early appointment quickly! I am aware of how hard it is to fast- my daughter had her wisdom teeth removed freshman year in high school and I was up most of the night with her blood sugars too low for comfort! Maybe if it can't be the first- she can stay up later-she is a college student! I just want to know as soon as possible since she will be going back to college in August and would like to help her figure some of this out before she gets thrown back into school!
     
  12. Caldercup

    Caldercup Approved members

    Joined:
    Oct 8, 2008
    Messages:
    1,008
    Also, make sure the GI team knows about your child's T1D. They might want you to play with her basal settings in order to keep her a skoosh above her normal range so she doesn't go low during the procedure. (It only takes a few minutes, but they don't want to deal with anything if it can be helped.)

    As for the "celiac is harder than diabetes" feeling, I do agree... to a degree. If our family had had to rely solely on packaged food, it would've really sucked. But I was already cooking all of our meals, so it was more a matter of learning what recipes can be altered to work for us. (We tend to eat foods that are naturally GF, so that made it easier.) If you bake, I highly recommend the America's Test Kitchen cookbooks called "How Can This Be Gluten Free. -- their chocolate chip cookies are so good my gluten-eating neighbor requests them all the time. When we ate out, we gravitated to either chains that had good reputations for GF menu items, or we went to small chef-owned places where we built a relationship with the kitchen so they knew how to discuss our needs.

    Is it fun? No. Is it livable? Absolutely. And the more people who realize the benefits of eating GF, the more places that will accommodate our needs. I swear, it gets easier every year.
     
  13. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    We've been at this for years, and I've never heard of this one. I put it in my Amazon wish list -- thanks for the recommendation!
     
  14. kail

    kail Approved members

    Joined:
    May 18, 2014
    Messages:
    88
    I'm sorry she is having to go through this but hopefully she will start to feel better after you change the diet. We did not do the biopsy. Our GI doctor did not feel it was needed with her high tests. Our only symptoms, in retrospect, was some wicked and stubborn nighttime lows where we would dump juice into her with little rise in blood sugars. Those went away after we took away gluten and presumably her digestion improved although I'm only guessing at the reason. Now that she has been gluten free for over 2 years, she does have symptoms with gluten. I know this because I accidentally gave her the wrong leftover pizza while we were on vacation a couple months ago and she took just one tiny bite before I realized but threw up quite a bit a few hours later. Sigh. Major guilt on that one. We saw the GI doctor once honestly to discuss diagnosis and never saw a dietician. Our endo checks her TTG levels at every appt which is about every 3-4 months. It took close to a year to come back into normal range and we have managed to stay there since then. The diet is challenging at times. Yes there are options and I know it is much better than before but it does add a layer of difficulty to everything you do. I think it would be much easier for an older child/adult but for a 4 year old-now 6y, it has been hard. I know my daughter would prefer to give up celiac if she had a choice. That being said, you absolutely can navigate many restaurants. Cooking at home is the easiest especially if the whole house is gluten free. It will be more difficult for someone living at dorm though or even apartment with other college students as she will need to be super careful to avoid cross contamination. Good luck
     
  15. 22jules

    22jules Approved members

    Joined:
    May 17, 2008
    Messages:
    906

    Thanks for your reply. We have the gastro scheduled for this Friday so I'm not sure what they will recommend. I think she would probably like the biopsy to confirm without a doubt but would probably be swayed by the gastro's opinion. I think there is probably no question that it is celiac because of her high ttg level plus we have seen some symptoms. She is currently eating a decent amount of gluten in preparation. It's hard for me because I have noticed lots of symptoms especially regarding the major mood swings that I would love a diagnosis but I didn't want this.

    I know that we will handle it though-just stinks cause some days the diabetes stuff is enough!
     

Share This Page

advertisement