Jump to content

  • 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

Well, We Got Our Prometheus Results...

Sesara

Recommended Posts

Sesara Rookie
Sesara
Posted

Of course, all the serum tests were negative. I really wasn't psyching myself up for anything else, but it's still frustrating, since I feel certain this GI won't give us a diagnosis without positive results, given his "inconclusive" biopsy results.

However, we did get the genetic results as well, and they at least make me feel like we're on the right track. He is a heterozygote, according to his results, but he is DQ 2.5, which is the most common DQ2 combination for Celiac. Prometheus rates his likelihood of developing Celiac at 10x the normal population and lists him as Category 4 - High.

I feel that, given our suggestive biopsy results, with those genes, if he responds positively to a gluten free diet, it deserves a diagnosis, but we'll see what happens. I will definitely be seeking a 2nd opinion if his current GI is unwilling to diagnose.

We are 3 weeks gluten free as of yesterday, and in the last couple days, I do feel like maybe we are seeing an improvement in his diapers. Not that they're normal, but they've finally lost the sandy, gritty stickiness, and are vaguely formed. He is also showing signs that make me suspicious that a growth spurt is coming on. I feel like we are on the right track and I am hopeful that, when we meet with his GI in another 2 weeks, we will have some weight gain and height gain to show for our efforts. Obviously, that'll be good enough to convince me, regardless of what his GI says.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I feel that, given our suggestive biopsy results, with those genes, if he responds positively to a gluten free diet, it deserves a diagnosis, but we'll see what happens. I will definitely be seeking a 2nd opinion if his current GI is unwilling to diagnose.

I agree with you. ;) Is there a family history of digestive disorders, or other autoimmune issues, as well?

Sesara Rookie
Sesara
Posted
  • Author

I agree with you. ;) Is there a family history of digestive disorders, or other autoimmune issues, as well?

Well, enough that DH and I both need to get tested, really. On his side, ulcerative colitis and late onset type I and II diabetes, and on my side, Hashimoto's thyroid and I have a *supposedly* unrelated disease called achalasia that is thought to be an autoimmune triggered esophageal motility disorder that has also been linked to DQ2 genes. I have a dr's appointment next week and based on my son's results am going to push for a Celiac plus panel to be ordered for me as well.

mamaupupup Contributor
mamaupupup
Posted

You are a great Mom!

I'll write more in a longer post one of these nights...

Based on my kids' diagnoses, I got tested. I had two sets of negative Celiac Panels (I was on a low gluten diet). I have done better off gluten, have two kids with Celiac, we all have DQ2 and DQ8. I decided to go to Dr. Harmon at UCLA for biopsies. Yep, I've got Celiac--my endoscopy was a Marsh 1. He has diagnosed me as Celiac, even with a negative blood panel. I think each person is different and each case should be treated uniquely.

Keep fighting for your son! :) I know you will. It may help if you have a positive Celiac diagnosis for another first degree relative.

Thinking of you!

faithforlife Apprentice
faithforlife
Posted

My Fam has same genetics-moderate, high, and very high risk genes. The 2 high risks DQ2 have celiac but doc says we should all be gluten-free. Doc also said with little ones it's hard to get a complete diagnosis but the signs can be the beginning of celiac, but could take a long time to be full blown! So, to me it sounds like that's where y'all are-and it's great to start the diet now! Why wait for more damage and disease?

Sesara Rookie
Sesara
Posted
  • Author

Well, our meeting with the dietician was very reaffirming. She basically told me that I am doing everything right in the way I am feeding him and her only recommendation was that we do allergy testing to make sure that there aren't other issues exacerbating his tummy problems. I have my first appointment with my new PCP on Monday, and while I had hoped that my son's GI office could get me a copy of DS's Prometheus results, of course they're too slow to do it in time. I can at least tell the doctor that he is positive for DQ2.5 and that I need a Celiac plus panel ordered and hopefully I can get bloodwork done there or set up quickly so that I can officially become gluten free and not have to worry that my colostrum is continuing to impede DS's recovery (he is still nursing a couple times a day at 22 months but I am 8 months pregnant and have no milk at present).

We also met with a new pediatrician for him today who seems much less intimidated by a Celiac diagnosis and I think will be a good fit for him. So fingers crossed, we can turn things around soon and find him gaining weight and having healthy looking poop!

mamaupupup Contributor
mamaupupup
Posted

You are super Mom! Congrats on nursing to 22 months and on your baby!!! I don't know how you're doing it all! Amazing!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.