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

New With Questions

meeshyo

Recommended Posts

meeshyo Newbie
meeshyo
Posted

Hi Everyone! This board has been so helpful in my quest for answers. My daughter Madison is 16 mos. She has been "rapid breathing" since about 3 mos. However, she showed NO other symptoms. She has been on the small side with a ravenous appetite. Around 11mos, she began respiratory problems. She was hospitalized with pneumonia and the pediatric pulmo.was certain she would test positive for CF. Fortunately, she did not. For the last 5 months, her lungs are stilled filled with secretions, but she seems healthy. She has dropped to the 3rd percentile in weight despite her ENORMOUS appetite. She poops A LOT and it smells awful. They did a blood test for celiac and only one (in the panel) came back positive. Apparently, it wasn't the "most reliable" one, but it did give indication of possibly having celiac. They re-ran the bloodwork just to be sure. I know it was supposed to be under 30 and hers was 80. They have scheduled her for an endoscopy and bronchoscopy hoping to find some answers. Anyone here with any advice/similar situation???

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

Celiac.com Sponsor (A8-M):


Guest Robbin
Guest Robbin
Posted

Hi and welcome. I am sorry you are going through so much with your little one. If she had a positive on any bloodwork, it is my understanding that she has celiac. A false positive is not possible. This is only speaking from my experience---as a child I constantly had lung congestion, sinus infections, wheezing, etc. I think that coupled with hayfever/allergies is common with celiacs. Just a couple of questions--does she have milk/dairy intolerance too? Is she gluten free now? Some drs. dx. only by bloodwork results and some dx with merely dietary response. Speaking for myself, I would do the bronchoscopy and not put her through the endoscopy, but that is only my opinion --maybe the dr. is looking for something other than celiac as well, so you should do what you think is best for your child. Take care and I will say a prayer for your little Madison.

TCA Contributor
TCA
Posted

Make sure they take plenty of samples with the endoscopy. It is hard to get reliable biopsies in kids under 5. If you get a positive, you can believe it, but there are often false negatives. You might want to be ready to undergo a diet trail no matter what. This was the story with our son. He was on nebulizer treatments 2 x daily and now has no issues since going gluten-free. Good Luck and I pray Madison feels better soon!

mommida Enthusiast
mommida
Posted

Many people have had the same type of symptoms (chronic congestion) for Celiac.

My daughter's blood panel showed the same elevation, of course it was the "least" reliable one for diagnosing Celiac. She bacame too ill for the endo w/ biopsy. She was genetically tested. Positive for two Celiac genes. The ped gastro. has diagnosed "probable" Celiac because we didn't do the endo.

You are stuck with the "it's now or never" situation for the endo w/biopsy. Understand the results are not that reliable, but you will probably never let her eat gluten again if you change her diet and she improves. If the damage it not there from ingesting gluten, she will never have a conclusive diagnoses, at least to most of the medical professionals. It may be harder to keep her on the gluten free diet when she is a teenager if she doesn't have the official diagnoses. Just some things to consider. Ask the doctor who would perform the procedure how many biopsies?, have they ever diagnosed Celiac before? what lab are the specimens going to? and any other question you might consider in the full explanation of every part of the proceedure.

L.

meeshyo Newbie
meeshyo
Posted
  • Author

Thank you, thank you, thank you! I would have NEVER connected her respiratory issues with celiac, but maybe there just is the connection. She NEEDS to have the bronchoscope done, we have battled with her rapid breathing and lung secretions for long enough. They are going to do the endoscopy at the same time, while she is already sedated...so hopefully, it won't be too bad. I really hope that we can get a conclusive diagnosis. What about her poop...it usually is of "mushy" consistency and has a rather foul smell. Also, when she was hospitalized at 11 mos. her stool came back with funny results in regards to "tripsin." They are re-running that stool study this week. Anybody know what this is? Anything related to celiac?

meeshyo Newbie
meeshyo
Posted
  • Author

I just saw the doctor and Madison's IGG bloodwork came back at 73.2 where anything greater that 20 is positive. Now I just have to wait for the endoscopy and bronchoscopy at the end of the month... <_<

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. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    3. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    5. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748
    Christian Konig
    Newest Member
    Christian Konig
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
×
×
  • 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.