Sick 16 Year Old!

[dermgirl]

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?

[momof4inla]

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. 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]

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]

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]

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.

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!