Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Update: Reason For Hope?


momxyz

Recommended Posts

momxyz Contributor

first thanks to all of you who have given me sound advice and encouragement. This is an update on my daughter, her story told here:

https://www.celiac.com/gluten-free/index.ph...uten+depression

She is now 8 weeks going gluten free. she wasn't perfect with it early on but she has learned a lot and is motivated and responsible. And it's not me mandating this, she has recognized the benefits.

Improvement in her depression has been gradual, but improvement has been noted by not just me, but others around her frequently. It's been like a subtle and gradual lightening.

She no longer complains about not sleeping well. I have to get her up more often now so she can get to where she needs to be on time.

Her constipation has improved. While she is not totally "regular" she has not had to take laxatives for several weeks now.

We had another pleasant surprise this week. She grew a 1/2 inch over the summer! While that may not sound phenomenal, you have to understand this is a kid who never had the typical "shooting upward" growth spurt; we celebrated when she grew 3/4 of an inch over the course of an entire year. Now she's a half inch taller than me!

I am hoping, so hoping this means something. I am hoping praying that she can now get her period without chemical assistance! And it would be so totally great if that could happen very very soon. (has not had a period since going off BC when depression diagnosed in July)

She has been seeing a psychologist and is to date not on any meds. Although she is feeling better, I am fearful she would still opt for meds as the "quick fix" if offered. She has an appointment with a psychiatrist on 9/23. I will be having a heart to heart with her this week, expressing my views on the value of staying off meds..... but she is almost 18 and wanting to take charge of her life. That is good in many ways but.....

it puts fear into the heart of this mom. If she got her period spntaneously, then this would help me talk to both her and the psychiatrist about the benefit and value of just continueing to stay gluten free w/o meds for a while longer...


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I am so glad to hear she is doing better. Funny how much that 1/2 inch can mean to us when growth has been badly effected. Hopefully the growth will continue and she will continue to improve in the other areas as well. If her depression is easing there is a good chance that it will continue to get better and she will not need the meds.

nasalady Contributor
We had another pleasant surprise this week. She grew a 1/2 inch over the summer! While that may not sound phenomenal, you have to understand this is a kid who never had the typical "shooting upward" growth spurt; we celebrated when she grew 3/4 of an inch over the course of an entire year. Now she's a half inch taller than me!

That's wonderful! So glad to hear about all of the improvements in your daughter! This must be a big weight off your shoulders!

We just got back from the pediatrician's office where we found out that Emma, our 3-year-old failure-to-thrive daughter, has grown a full inch in height since May! Unfortunately she lost about 1/3 of a pound (0.15 kg), but we think that's because of her throat surgery at the end of August. Emma's been gluten free since January....I really think that this is why she grew so suddenly.

So *happy dance* for our daughters and their progress on the gluten free diet!! :D

JoAnn

momxyz Contributor
That's wonderful! So glad to hear about all of the improvements in your daughter! This must be a big weight off your shoulders!

We just got back from the pediatrician's office where we found out that Emma, our 3-year-old failure-to-thrive daughter, has grown a full inch in height since May! Unfortunately she lost about 1/3 of a pound (0.15 kg), but we think that's because of her throat surgery at the end of August. Emma's been gluten free since January....I really think that this is why she grew so suddenly.

So *happy dance* for our daughters and their progress on the gluten free diet!! :D

JoAnn

good for Emma! I hope she continues to prosper.

As far as my daughter is concerned, we are at a different end of the spectrum... while she is happy about the 1/2 inch what she is really looking for is an advance from A cup to B cup....but the slight jump upward hopefully will be a precursor to that!!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,158
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...