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Really Scared To Go To The Specialist
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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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