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melanie_c

First Dr. Appointment Today

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I have my first Dr's appointment today at 2:30 PM. I'm hoping he takes me seriously and doesn't say something like - oh I doubt you have that or it's very rare. My main issue I'm going to start with is the cronic daily loose stools. Then I'll talk about my stomach bloat, gas, cramping, running to the bathroom. The stomach issues have been going on since at least early 2000 and I'm pretty confident I can remember these issues when the kids were little and they were born in 92, 97. I know there was a time at least in the early 2000's if not late 90's that I went in to this same Dr. with GI issues and he said I had IBS. This was just said after talking to me, no tests or anything. I also want to emphasize that I have had low iron levels for a while now(including this Dr's office calling me to tell me to take iron pills a few years ago) and at least once had a liver panel be off.

I've really been paying attention to my stomach issues this week. The majority of my issues are after lunch, although they do happen at different times too.

Monday: Ate out for lunch - Cramping, bloating, gurgling, had to use bathroom at work (I try very hard not to)

Tuesday: Brought lunch - gurlging and light cramping all afternoon

Wednesday: Brought Lunch- bloating, light cramping, slight gurgling

Thursday: Ate out for lunch - Serious bloating and gas that extended into upper abdomen, very uncomfortable all afternoon.

Wish me luck!

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Well, good luck.

In all those lunches, did they contain gluten?


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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Well, good luck.

In all those lunches, did they contain gluten?

Yep - Although I have had gluten for lunches and dinners too - it's most pronounced and maybe because I'm sitting at work and can't get up and move around, go to the bathroom, etc.

Monday - Brick oven made pita's and probably some type of gluten in the falafel -

Tuesday- Pasta and breadcrumbs

Wednesday - Pasta

Thursday - Flour Tortilla - not sure about the tortilla chips I ate. Not sure if they were corn or flour.

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In my case, my stomach yuck was from dairy, and still is. Journaling is good. With me I had to look back 24 hours to figure out what was effecting me if it was glutens, dairy would give me a gurgly stomach as soon as it got into my system. Good luck and let us know how it turns out.


Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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Go in educated! If he tells you it's rare then ask him if 1 in 133 people in the US is rare. Take this list of tests and make sure the full panel is run: http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

Highlight the name of each test and even ask the person drawing blood to verify that those are the tests being run. Good Luck!


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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In my case, my stomach yuck was from dairy, and still is. Journaling is good. With me I had to look back 24 hours to figure out what was effecting me if it was glutens, dairy would give me a gurgly stomach as soon as it got into my system. Good luck and let us know how it turns out.

Wow - 24 hours with Gluten. I've been Dairy free for more than a year, so I know it's not that. I used to think it was and there was some improvement after going off dairy, but it didn't last. I actually eat no meat, eggs or dairy. My diet is completely plant based.

I had triscuits for lunch along with hummus today (homemade so I know what was in it) and the gurgling, bloat and gas is really getting going now. Not the worst I've ever had, but it's early still :) I started eating that about an hour ago. It will be interesting to see how I feel when I'm at the Dr's. Might be good to be bloated and gurgling.

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Go in educated! If he tells you it's rare then ask him if 1 in 133 people in the US is rare. Take this list of tests and make sure the full panel is run: http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

Highlight the name of each test and even ask the person drawing blood to verify that those are the tests being run. Good Luck!

Thanks - Just printed. This is very helpful.

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Wow - 24 hours with Gluten.

Gluten reaction times can vary a lot from person and even for the same person. In some cases reactions can take as long as a week to show up although most react within 1 to 3 days. It can make it difficult to pinpoint what 'got' you after you have gone gluten free so keeping a food and symptom log can be very helpful. Eventually you should be able to figure out your own symptom pattern. Glad to hear you haven't gone gluten free yet. Hope your appointment went well. Always keep in mind that your doctor works for you. If your doctor refuses to test when you have symptoms suggestive of celiac it is time to find a new doctor or at least get a referral for a second opinion.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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This is probably too late for your appointment, but don't let the doctor try to tell you you have IBS (Irritable Bowel Syndrome). You wouldn't believe the number of celiacs who walked around for years with that diagnosis :rolleyes:


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Things went very well. I was happy to hear they are taking me seriously and are planning on doing all sorts of things to rule a LOT of things out. The first person I talked to was a student physican's assistant. She was very thorough and spent a lot of time talking to me. The only thing I didn't like is that she said there was no way I could get enough nutrients because I was vegan and didn't eat/drink dairy. After that she seemed to look at me like I was a freak, but she seriously needs to get some training in nutrition because she was acting like there was no way I could thrive without drinking milk/eating cheese ?????????? I eat healthier than the majority of Americans and am very diligent on the nutrients I put in my body. There are plenty of ways to get "more" of the nutrients that dairy provides, and that isn't hard at all. I digress about that. The Dr' came in and talked to me for a while too. Here is the plan.

This week: 3 stool samples I have to collect for the next 3 days and a a complete celiac panel, CBC, liver panel, Iron test and I think there might have been a few things like I think I heard him say Thyroid, etc. He want's to rule out any parasites. He was asking me all sorts of questions about eating anything, any illnesses, any exotic vacations, any antibiotics I've taken, any raw foods like sushi, etc.

Then when I take those in to the lab early Monday I'll get the bloodwork done. When the labwork comes back we will re-evaluate. If the celiac panel comes back positive then we will go that route, if not then he is going to send me to a GI Dr (I think the next step would be this even if the celiac panel comes back) unless they find something like parasite or something that comes back abnormal that leads them in another direction.

Once the bloodwork comes back he is going to most likely send me to the GI Dr to get 1. a colonoscopy to rule out any colon issues, Crohns Disease and other issues like that. - If the Celiac info comes back positve and he might have even said even if it doesn't an endo to look for damage. I'll push for this even if the labwork comes back negative.

I'm happy that they seem to want to do many different forms of ruling out things to find out what/if anything is wrong. He did say in the end, it may end up being IBS and he did put IBS for now on my chart (well that was on my chart years ago- what good does that do, lol). Anyway.......it's a step in the right direction. I'm really nervous about collecting these stool samples the next 3 days. But, it will be good to have it checked out to see what's in it.

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It sounds like it was a pretty good appointment. The one thing I would request is that they do both the endo and the colonoscopy at the same time. No reason for you to pay copays for 2 procedures when both can be done in one shot. If your blood work is positive you do need the diet no matter the results of the scope. After all celiac related testing is finished do give the diet a strict try no matter what the results are but DO NOT go gluten free until after all the celiac tests are done. You don't have to wait on the results though.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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