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I Officially Love My Doctor!


Mandy F.

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Mandy F. Apprentice

I've basically been sick since last March with disabeling fatigue and some swollen glands. Doc tested me for everything she could think of back then and everything was negative so she said it was probably a virus. It came back at the beginning of Oct. I saw a doc but not mine (he didn't even look at my chart <_< ) because my doc was booked. He said it was a virus despite everything I told him about what happened to me in the spring. I decided to start looking into specialists on my own.

I ended up going to the ER last Wednesday after being so weak that I could not stand. The docs reccomended that my family doc start looking for more rare things but didn't do much (I didn't expect them too, but they were very nice and understanding).

The first appt I could get with my doc was Tuesday. She reviewed everything and said that she was just going to redo it all to see if anything had changed. She was really nice and understanding. She asked me if this could be depression (I've had a history) and I assured her it wasn't and she acutally believed me! :blink: She then started saying that she was going to send me to see some specialists, a neurologist and a rheumatologist. When she started talking about the specialists I broke down. I have been so exhausted that I was afraid to drive my car for fear that I would fall asleep at the wheel. I told her "at this point, I just want to be admitted to the hospital until we can find out what is wrong" To my surprise she said "I don't have any problem with doing that but the insurance company might. I'll go ahead and admit you. The insurance company will give me at least 23 hours then I'll have to do more convincing. At least that way we can get some tests done and some specialists in to see you." I went to lunch then to the hospital.

I was in the hospital for less than an hour before a neurologist walked in to assess me. She talked to me for 5 minutes and determined that I was depressed :angry:. I went off on her. I told her that for 20 years I had been told that every symptom I'd ever had was stress or depression and in the last 5 years I found out that I had celiac disease and endometriosis and she didn't know what she was talking about. She stuck to her guns anyway ("sometimes you just can't tell you're depressed when you are") and they started giving me an antidepressant. My doc just told me to go along with it because it could help but she still set me up with a rheumatologist.

He came in and did an eval and actually asked me questions! He said that I had such a long history that I could have a lot of things and that I had a lot of symptoms of fibromyalgia. He took 5 vials of blood :rolleyes: .

So, this afternoon, my doc called my room and told me that my TSH had come back low and my ANA had come back positive. She had done both of these tests twice before with normal results. But she agreed that if I hadn't been in the hospital, this probably would have taken months to figure out and called in my new meds to my pharmacy immediately.

Now I'm just waiting for the rest of the rheumatologist's tests to come back and I have to follow up with my doc next week. She was totally nice, though, and I'm just glad to finally have someone listen to me and take me seriously. :D

Side note on the food: the first meal, they didn't know that I was gluten-free (but no big deal, I ate lunch right before I got there). After that the dietician came to talk to me and said that everything would be gluten-free and if it wasn't, have a nurse come to get her. Everything was gluten-free, but I didn't get to pick my own food and they would not give me Kraft Ranch salad dressing b/c "modified food starch". I asked to speak to the dietician about it and she said "well, basically it's hospital policy that I have to make your menu so we don't get sued. My supervisor won't allow me to give you anything but oil and vinegar." Then she asked me what I did and didn't like so she could make me better menus. But then I went home... but at least they were looking out for me and I could eat safely.


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almostnrn Explorer

I am so glad you have finally gotten someone to listen to you. Hopefully they will get to the bottom of what has been making you so ill quickly so you can feel better soon!

SchnauzerMom Rookie

Wow, I hope they figure out what is wrong so that you can get some relief. I'm glad your doctor is listening to you and taking you seriously.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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