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!
|
|
Celiac.com Sponsor: |
6 replies to this topic
#2
GottaSki
-
- Moderators
-
- 3,035 posts
"Migratory flight complete."
Posted 29 October 2012 - 07:50 AM
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.
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.
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#3
GFinDC
-
- Advanced Members
-
- 3,518 posts
A little farting never hurt anybody... :-).
Posted 29 October 2012 - 09:01 AM
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.
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
#4
Takala
-
- Advanced Members
-
- 2,555 posts
Advanced Community Member
Posted 29 October 2012 - 05:51 PM
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.
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.
#5
moonablaze
-
- Members
-
- 7 posts
New Community Member
Posted 30 October 2012 - 01:20 PM
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. 
Granted, for all I know it will turn out that I'm having some unrelated issue. Who knows.
Granted, for all I know it will turn out that I'm having some unrelated issue. Who knows.
Edited by moonablaze, 30 October 2012 - 05:52 PM.
#6
GottaSki
-
- Moderators
-
- 3,035 posts
"Migratory flight complete."
Posted 30 October 2012 - 01:30 PM
Glad you are moving forward. Hope your GI appt is helpful 
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#7
moonablaze
-
- Members
-
- 7 posts
New Community Member
Posted 31 October 2012 - 05:28 PM
Apparently another of the tests was for H. Pilori antibodies and was positive, so there's a good chance I have an ulcer. joy.
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users
