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Really Scared To Go To The Specialist
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7 posts in this topic

I figured out that I have celiac 2.5 years ago from a combination of elimination diet, symptoms and 23andme results (I had previously been diagnosed as having IBS for 5 years, getting progressively worse). My GP at the time felt that was good enough after I tried to go back on gluten to get tested and ended up curled on the floor of my bathroom for 2 days. My new GP was comfortable enough to put the diagnosis in my record but I have been having more symptoms since a recent glutening, and I want to go see a GI specialist. My GP/insurance company is making me go in to see the GP for a screening first but I know I can get past that (my belly has been distended for 2 weeks, I've been constipated and I've been having pain after almost every meal, among other things).

What I'm afraid of is that I'm going to get to the Gastroenterologist and be told it's all in my head, have my diagnosis blown off and/or be told the doctor won't do anything unless I go on gluten for a month to get a "proper" diagnosis. I know a gluten challenge is out of the question, (I'd be incapacitated and I have a physical job that I can't take that much time off from). I do have one test result that supports the celiac diagnosis, a deficiency of intrinsic factor of B12.

What would you guys do? How can I prepare myself to get what I need from the doc? I'm comfortable arguing with doctors in general, but I don't know what I'm asking for at this point. I have no idea what's wrong!

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If possible find a GI that specializes in Celiac Disease within your system so that you can request a particular doctor when you see the new primary.

One possible reason for your current symptoms could be Small Intestine Bacteria Overgrowth (SIBO). Might want to read a bit about it before your appt.

I wasn't clear if you have had celiac blood work before, but I would request a full celiac panel along with nutrient testing from the primary so the results are ready for the GI.

Good luck, be clear and concise regarding your history with gluten and bring a list of all symptoms that improved when you removed gluten along with your current symptoms. You'll do fine.

I do hope you are feeling better very soon.

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Pain after eating could be several things. You might have an ulcer, or you might have gall bladder issues, or you might have gastritis, etc. You might just be gassy. Write down your symptoms as Lisa suggested. It doesn't matter if you have celaic or not, you have symptoms you want help with and that is the doctor's job.

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Since you know your are already at least gluten intolerant if not officially celiac, you tell the Gastro doctor you are unable to go back on gluten for testing because it incapacitates you. Then it is up to he/she to devise the next steps. Don't make yourself sick just for test.

Your symptoms could be chronic mild levels of cross contamination and/or glutening. It is also more proof that you are celiac, because celiacs become more sensitive to accidentally ingesting gluten as time progresses on a gluten free diet. Try going over your diet and anything else that goes into your mouth, such as medications, especially newly purchased items, and making sure that those items are gluten free. Also, you can have developed an additional problem to something like oats, and may need to avoid oats or oat cross contamination more carefully, or soy, or another food such as the fillers in certain artificial sweeteners,etc.

Going "back to basics" and then adding in one food at a time can help pinpoint this problem. I had to ditch several items last winter, and switch brands on a few more, which is sort of odd after the amount of time I've been avoiding gluten, but I am so much better without them, it is worth it.

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I've apparently put the cart before the horse. Because I don't have a proper diagnosis (And I will not be getting one as I'm not going to do a gluten chalenge), the GI docs want a series of tests before I can come in. Today they took 4 vials of blood (liver panel, kidney panel, cbc, lipid panel, fasting blood sugar and various vitamins), and on thursday Friday I'll be getting a fasting abdominal ultrasound to check my gallbadder and pancreas. :rolleyes: Granted, for all I know it will turn out that I'm having some unrelated issue. Who knows.

Edited by moonablaze
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Glad you are moving forward. Hope your GI appt is helpful :)

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Apparently another of the tests was for H. Pilori antibodies and was positive, so there's a good chance I have an ulcer. joy.

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    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
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    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
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