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

Sick 16 Year Old!

dermgirl

Recommended Posts

dermgirl Rookie
dermgirl
Posted

These doctors today drive me mad. I have a 16 year old daughter who is sick. Here is the run down or I should say her run down, 2008 she had mono...she has never been the same since. She catches everything...she has no energy, she sleeps when she gets home from school. I took her to the doctor last summer because she had a wierd rash only on her knees and elbows. Doctor said it must be contact dermatitis??? She has gained 15 pounds in the last 6 months, suffering with a headaches every day. She has had a MRI, which was clear. A cat scan...showed a sinus infection. She does not have any stomach issues (as of yet). I suggested the doc check her thyroid....since I have hashimotos. She now has hypothyroidism and is hypoglycemic!! I was tested by blood test for celiac last month, it was negative. I paid to have Enterolab do gluten sensitvity test and the gene test. I do have a HLA-DQ 2,3 (Subtype 2,7)--and a 17 on IgA. I have an appointment scheduled a gastro in a few weeks. My issue is all stomach..and eczema. I took her in to today for a follow up on her thyroid. I have to admit until a month ago, I had never heard of celiac or gluten sensitivity. After my research and receiving my entero labs back, my eyes are wide open. I see the puzzle connecting. I don't want her to have to wait 40 years before she is diagnosed. Today the doctor basically looked at me like I was an idiot. I explained to him about my testing results, he let me know how that was "not" in his medical books! He obviously thought she was depressed. I let him know if he felt as bad as she does, he might be depressed also. He just wanted to give her a pill for depression! He had NEVER heard of a fecal gluten sensitivity test, nor did he believe it was legitimate. I suggested he may want to do his own reesearch! I convinced him to do a full celiac blood panel, yesterday I ordered the same enterolab tests I had done a few weeks ago. I also requested he send her to the gastro...which is familiar with the whole gluten and celiac issues. I have learned how important it is to do your research and fight for your own health! As soon as my scopes are done and she has completed her enterolab tests...this family is going to be gluten free. I am so frustrated about the medical care. Why don't doctors listen?? I just had to vent....but wonder if this has happened to others?

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

Celiac.com Sponsor (A8-M):


momof4inla Newbie
momof4inla
Posted

I am new here and tested negative (blood test) for celiac as well and am about to start a gluten free diet as well, so I don't have as much knowledge as everyone else here.

However, I have been researching gluten for weeks and from everything I have read... doctors are STILL so misinformed about Celiac and gluten intolerance... it is despicable. My own dr told me "Not that many people have that" when I requested a Celiac test. :blink: And it was a GI I saw! Many also don't realize that you can be gluten intolerant and not actually have the disease. I don't know why they won't listen to patients - it's like they want to keep their head in the sand!

Anyway, good luck and I just wanted to assure you that from what I have read... it is more normal for the dr to blow it off than listen and consider it!

jackay Enthusiast
jackay
Posted

It really is annoying to know that they have so much education and not a clue.

I hope you and your daughter heal quickly.

snapdragon Newbie
snapdragon
Posted

I think it is just wrong when a doctor encounters a patient with problems outside their normal 'scope' so just dismisses it as 'nonsense' or 'IBS' or whatever else they come up with because they don't want to admit they don't know! I would have much more faith in a doctor who said to me "Look, I haven't really come across this before, but let's look into it and get to the bottom of the problem together".

They're supposed to be on our side, aren't they? It is very frustrating. I hope you and your daughter get some answers soon.

mommida Enthusiast
mommida
Posted

Dermgirl,

I am so glad you have this figured out. :) It is very sad that you had to figure it out. Doctors write IBS in the diagnoses line so they get paid. :blink:

Please try and work with a doctor to rule out any other underlaying cause or consequence of the symptoms. The hardest part now is waiting til after all the testing is done to go gluten free. ;)

You have a great resource here for gluten free living challenges!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748
    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.