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Going For First Gi Appointment Tomorrow


SLB5757

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SLB5757 Enthusiast

Hello all!

I have had troubles with my stomach for about 3.5 years now. It started when my little guy was about 6 months old, although I did have terrible heartburn the whole pregnancy. It started very seldom then became a daily and every time I ate kind of thing. I had diarreah for 4 weeks straight, went down to 92 lbs from 102 lbs, and then the diarreah subsided. I had a scope done in April 2007 and it showed mild inflamation/acid reflux so that's the route they took for quite a while. They did a Hida Scan, gastric emptying scan and bloodwork (cbc) and all were fine. I have been on nexium to treat the Acid Reflux for 2 months now - but still get stomach pains that are severe...have bloating...have distention....and just uncomfortable in general.

I went to the allergist in March and the tests showed I was allergic to Wheat, Soy, Peanuts, Corn, Oats, Carrots and many other things that showed mild allergies. Cultivated Corn and Wheat Pollen were the highest level they could be at, and the actual wheat we eat was a 3 on a 0 to 5 scale. The allergist suggested staying away from wheat as I couldn't eliminate every food from my diet. My General Practitioner said NOT to eliminate wheat or I would have a host of other issues that would happen. The GP has referred me to the GI doc tomorrow - but told me that "when it comes back that you have IBS and Acid Reflux, you have to stop pressing this issue and live your life". The GP actually told me that I need to INCREASE fiber and not eliminate it. Grrrrr. Even last night I ate a bowl of shredded wheat - and I have been paying for it ever since. I do not get diarreah ( I used to go after EVERY meal as a child my whole life...I was always the thinnest/shortest kid in class), but I get bloating/belching/distention/heartburnish feeling/and sharp pains when I eat things such as Bread or Pasta or cereals to name a few. And it doesn't go away quickly...I am still dealing with the tummy trouble from my cereal last night at 7 pm, and it is 12 in the afternoon the next day!

I still really feel like I have Celiac disease and could be a poster child with my various symptoms/history. Im not sure what I should ask the GI doc to make sure that he tests for the Celiac. It seems like I have been blown off by the GP, and I am concerned that the GI may do the same.

Any tips before tomorrows appointment would be appreciated =) I really hope they can figure this out soon!!


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Amy Joe Rookie

I am fairly new to all of this so I don't have a lot of advice. Something you said TUCK with me as I was reading. About what your GP said....IBS and Acid Reflux.....live with it! WOW I thought I was the only person to win the lottery of a bad GP!! I was on Nexium when it first came out, Prilosac before that. The Nexium I had to take 2 times per day and it never helped. 9 years of this!

Well I got a new GP, an Endo which found Celiac. I had never heard of it before. Am in day 2 of gluten free.

When I met with the GI he asked if I had ever had "problems"....oh ya I did I told him but, my GP told me it's just "My nerves and IBS, it's just who I am". He was shocked! Yup that's what he told me.

So for your appointment, I would just write out your questions about how you feel, what happens with your stomach when you eat.

I hope your appointment goes well for you and you get the treatment and answers you deserve!

Amy Joe

SLB5757 Enthusiast
I am fairly new to all of this so I don't have a lot of advice. Something you said TUCK with me as I was reading. About what your GP said....IBS and Acid Reflux.....live with it! WOW I thought I was the only person to win the lottery of a bad GP!! I was on Nexium when it first came out, Prilosac before that. The Nexium I had to take 2 times per day and it never helped. 9 years of this!

Well I got a new GP, an Endo which found Celiac. I had never heard of it before. Am in day 2 of gluten free.

When I met with the GI he asked if I had ever had "problems"....oh ya I did I told him but, my GP told me it's just "My nerves and IBS, it's just who I am". He was shocked! Yup that's what he told me.

So for your appointment, I would just write out your questions about how you feel, what happens with your stomach when you eat.

I hope your appointment goes well for you and you get the treatment and answers you deserve!

Amy Joe

SLB5757 Enthusiast
I am fairly new to all of this so I don't have a lot of advice. Something you said TUCK with me as I was reading. About what your GP said....IBS and Acid Reflux.....live with it! WOW I thought I was the only person to win the lottery of a bad GP!! I was on Nexium when it first came out, Prilosac before that. The Nexium I had to take 2 times per day and it never helped. 9 years of this!

Well I got a new GP, an Endo which found Celiac. I had never heard of it before. Am in day 2 of gluten free.

When I met with the GI he asked if I had ever had "problems"....oh ya I did I told him but, my GP told me it's just "My nerves and IBS, it's just who I am". He was shocked! Yup that's what he told me.

So for your appointment, I would just write out your questions about how you feel, what happens with your stomach when you eat.

I hope your appointment goes well for you and you get the treatment and answers you deserve!

Amy Joe

Hydrokube Rookie

I went to the GI today and brought with me a huge list of symptoms and family history and explained that I think I have Celiac based on my research. He ended up cutting me off a bit after I said my sister has Crohns because I guess that's a red flag to be tested either way. He did say that he will be testing me for Celiac too, but he's skeptical about it, although he seems to be open-minded. My tests are Tuesday.

Just explain yourself and ask for a blood test at the very least. If he refuses, find a different doctor.

Stay on gluten until your tests are done though, it can skew results if you go off of it. For fiber, beans and rice are your friends :)

SLB5757 Enthusiast

Thanks for the responses. I went to the Gastro appointment, and again left feeling a bit uneasy about everything.

The doc basically shot down my thoughts about celiac and only wanted to consider IBS. He does not want to re-scope me (I had a scope done 4/07 by a gastro who is no longer practicing). He said that my original scope was to check for malabsorption after a 10 lb. weight loss back then - so the first gastro had to check for Celiac. I explained to him that from what I read online that the test was probably skewed because the reason I had lost 10 lbs in two months was that I was eating only whote rice and ensure for more than two months...and he said "hmmmm". Still wanted to go with IBS diagnosis because I now have constipation instead of diarreah and he said that IBS can switch on and off and you will have migratory pain with it which is what I was explaining to him.

He did order a celiac panel to appease me but said it would most likely come back negative and we will diagnose it as IBS. Ummmmm. great :( That's something I can't fix...and I don't know if I can deal with pains and bloating and distention much longer.

The tests that are on the panel say:

Antigiladin Abs, IgA

Antigliadin Abs, IgG

Endomysial AB, IgA

Reticulin IgA AB

Reticulin IgG, AB

TTG (IGA and IGG

IGA

Seems pretty comprehensive so I guess if I am at all sensitive to gluten something should be indicated on these tests. I will just have to accept his diagnosis of IBS and stop with the Celiac idea if these tests are negative. I just wished that I had something treatable.

Hydrokube Rookie

If he refuses the endo and you don't want to find yet another doctor, I'd recommend trying the diet for 3-6 months. It's not that difficult once you get in the swing of things, but you WILL need to cook more. However, you'll find that you'll be eating a lot more whole foods. From what I've read, many people on this forum have issues getting their doctors to diagnose them even when all of the signs are there. It's considered an uncommon disease, but it's more common than they think and their testing is often wrong or conducted improperly.

Again, trying the diet will make any testing come back negative after a period of time, so this would basically be you trying to self-diagnose. Keep a food journal, monitor how you feel, and most of all get rid of everything and anything gluten in your house.

1. Wooden spoons absorb gluten

2. Teflon pans with scatches absorb gluten

3. All cosmetics/hygiene products need to be checked (even something like floss)

4. All foods should be checked on the internet or the companies will need to be called

5. Avoid eating out

6. Most people say to avoid dairy too for the first few months

7. Get a new toaster

Be sure you're not ingesting any hidden gluten or you won't improve. Don't buy anything that says it's made in a facility with wheat products (some gluten-free products say this). You may not feel better right away, it took me almost the two full weeks when I was trying it to notice dramatic energy increases. I think I have it but I'm back on gluten now for the testing. ALSO, the doctor said the same thing to me about thinking it's IBS, but Celiac disease has over 200 symptoms, since an auto-immune disorder of the intestines can also manifest itself almost anywhere. He didn't know anything about dermatitis hepaformis (I even showed him), which I believe I have on my leg. Regardless of how my testing comes out, I'm going gluten-free to verify for myself. I was already starting to feel better in 2 weeks, and my other symptoms that had started clearing up were gas, fatigue, bloating, acne, weight gain (I'm underweight), irritability (much more calm), no more undigested food in my stool, going #2 less often (usually 3-4 times a day when I'm on gluten).

The food test is really the final test, if you feel a lot better, forget a formal diagnosis and stick with the diet. If you ever want to get diagnosed at a later date though, you will need to eat gluten for what I hear is at least a month (could be more), so keep that in mind. For example, I was off gluten 2 weeks and started eating it again and I'm tired all the time, stomach aches, etc worse than usual. It's certainly unpleasant.

One last thing, an endo to test if you're malabsorbing will only be a test for Celiac too if he took biopsies.

Good luck, hope you get the results you're looking for with the blood test.


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Leiana Rookie
If he refuses the endo and you don't want to find yet another doctor, I'd recommend trying the diet for 3-6 months. It's not that difficult once you get in the swing of things, but you WILL need to cook more. However, you'll find that you'll be eating a lot more whole foods. From what I've read, many people on this forum have issues getting their doctors to diagnose them even when all of the signs are there. It's considered an uncommon disease, but it's more common than they think and their testing is often wrong or conducted improperly.

Again, trying the diet will make any testing come back negative after a period of time, so this would basically be you trying to self-diagnose. Keep a food journal, monitor how you feel, and most of all get rid of everything and anything gluten in your house.

1. Wooden spoons absorb gluten

2. Teflon pans with scatches absorb gluten

3. All cosmetics/hygiene products need to be checked (even something like floss)

4. All foods should be checked on the internet or the companies will need to be called

5. Avoid eating out

6. Most people say to avoid dairy too for the first few months

7. Get a new toaster

Be sure you're not ingesting any hidden gluten or you won't improve. Don't buy anything that says it's made in a facility with wheat products (some gluten-free products say this). You may not feel better right away, it took me almost the two full weeks when I was trying it to notice dramatic energy increases. I think I have it but I'm back on gluten now for the testing. ALSO, the doctor said the same thing to me about thinking it's IBS, but Celiac disease has over 200 symptoms, since an auto-immune disorder of the intestines can also manifest itself almost anywhere. He didn't know anything about dermatitis hepaformis (I even showed him), which I believe I have on my leg. Regardless of how my testing comes out, I'm going gluten-free to verify for myself. I was already starting to feel better in 2 weeks, and my other symptoms that had started clearing up were gas, fatigue, bloating, acne, weight gain (I'm underweight), irritability (much more calm), no more undigested food in my stool, going #2 less often (usually 3-4 times a day when I'm on gluten).

The food test is really the final test, if you feel a lot better, forget a formal diagnosis and stick with the diet. If you ever want to get diagnosed at a later date though, you will need to eat gluten for what I hear is at least a month (could be more), so keep that in mind. For example, I was off gluten 2 weeks and started eating it again and I'm tired all the time, stomach aches, etc worse than usual. It's certainly unpleasant.

One last thing, an endo to test if you're malabsorbing will only be a test for Celiac too if he took biopsies.

hi

thanks for the info. got an appt later on with gastro dr. trying to find out if i have a malabsortion problems with the intestines and have lost weight. did you gain your weight back after you went on the diet??? you said you were underweight. i need to gain at least 30 ilbs. i just started on the diet this week...not really sure what to eat. went to the store and bought some gluten free foods and they taste terrible. so i dont know how long that will last. but it would be great if i gain some weight with a gluten free diet. it must be cause the intestines are healing back up and absorbing the vitamins and nutrients. its like learning how to eat all ever again. anyone else know about this?? thanks :unsure :unsure:

Good luck, hope you get the results you're looking for with the blood test.

Hydrokube Rookie

I was only on the diet for two weeks and I gained 3 pounds, I wouldn't expect it very quickly though. Some people can take up to 2 years to heal fully and start seeing/feeling results. My difference is that I didn't just lose weight, I've been the same weight for 10 years, but underweight (125 at 5'11"). I used to eat the equivalent of 4 sandwiches per meal and couldn't gain weight at all, and I had horrible digestion problems.

Here's what we've found to work in just two weeks, quite good:

1. Chili with fresh veggies

2. Brown rice with veggies

3. beans with jalapenos and tomatos (serve hot or cold, like a bean salad kinda)

4. potato topped vegetables (mashed potatoes on broccoli/mushroom/zuccini/whatever else you want) baked in the oven, might be a can of mushroom soup in there, so you need to find a gluten-free one

5. Quick and easy, Carnation instant breakfast classic chocolate is gluten-free

6. Quinoa with veggies

7. Fresh fruits

8. Larabars for on the go (these are really good)

9. Raw nuts (cashews/sunflower seeds/almonds are my favs)

10. Crackers or carrots and hummus

11. Avocado mashed with chips for the fats, you probably need it if you're underweight

Good luck!

ravenwoodglass Mentor
Thanks for the responses. I went to the Gastro appointment, and again left feeling a bit uneasy about everything.

The doc basically shot down my thoughts about celiac and only wanted to consider IBS. He does not want to re-scope me (I had a scope done 4/07 by a gastro who is no longer practicing). He said that my original scope was to check for malabsorption after a 10 lb. weight loss back then - so the first gastro had to check for Celiac. I explained to him that from what I read online that the test was probably skewed because the reason I had lost 10 lbs in two months was that I was eating only whote rice and ensure for more than two months...and he said "hmmmm". Still wanted to go with IBS diagnosis because I now have constipation instead of diarreah and he said that IBS can switch on and off and you will have migratory pain with it which is what I was explaining to him.

He did order a celiac panel to appease me but said it would most likely come back negative and we will diagnose it as IBS. Ummmmm. great :( That's something I can't fix...and I don't know if I can deal with pains and bloating and distention much longer.

The tests that are on the panel say:

Antigiladin Abs, IgA

Antigliadin Abs, IgG

Endomysial AB, IgA

Reticulin IgA AB

Reticulin IgG, AB

TTG (IGA and IGG

IGA

Seems pretty comprehensive so I guess if I am at all sensitive to gluten something should be indicated on these tests. I will just have to accept his diagnosis of IBS and stop with the Celiac idea if these tests are negative. I just wished that I had something treatable.

Please do not take the test results as an absolute if they are negative. After all testing is done, both blood and endo make sure you give the diet a good strict try for a couple of months. My doctors reliance on blood work delayed my diagnosis by many painful years.

GottaSki Mentor

My blood test barely indicated Celiac -- my Primary said to make sure you ask for someone that WANTS a Celiac case when making the appointment with GI. Turns out we have a Celiac Center here at UCSD so I ended up with a Celiac Specialist -- he listened to my symptoms and decided to go forward with the endo even tho my blood was only slightly indicating Celiac. My endo revealed heavy damage and the biopsy confirmed Celiac.

OH -- I had begun taking pictures of visual symptoms as over the years the docs would just nod, note my file and send me on my way over symptoms they could not see for themselves.

Although not my best photographs...I do believe the one of me looking 9 months pregnant in the evening compared with a slight tummy the next morning brought the visual back to the docs. Also had my first rash this past january, took pics of it because i couldn't get into dermatology for three months...rash lasted 6 weeks but i still have the photos to share -- turns out the rash was a key in diagnosing my celiac.

Good Luck and trust your gut (both meanings intended)!

gfb1 Rookie
My blood test barely indicated Celiac -- my Primary said to make sure you ask for someone that WANTS a Celiac case when making the appointment with GI. Turns out we have a Celiac Center here at UCSD so I ended up with a Celiac Specialist -- he listened to my symptoms and decided to go forward with the endo even tho my blood was only slightly indicating Celiac. My endo revealed heavy damage and the biopsy confirmed Celiac.

OH -- I had begun taking pictures of visual symptoms as over the years the docs would just nod, note my file and send me on my way over symptoms they could not see for themselves.

Although not my best photographs...I do believe the one of me looking 9 months pregnant in the evening compared with a slight tummy the next morning brought the visual back to the docs. Also had my first rash this past january, took pics of it because i couldn't get into dermatology for three months...rash lasted 6 weeks but i still have the photos to share -- turns out the rash was a key in diagnosing my celiac.

Good Luck and trust your gut (both meanings intended)!

your post made me smile...being 'barely celiac' is indeed like being a 'little bit' pregnant...

Ang615 Newbie
My blood test barely indicated Celiac -- my Primary said to make sure you ask for someone that WANTS a Celiac case when making the appointment with GI. Turns out we have a Celiac Center here at UCSD so I ended up with a Celiac Specialist -- he listened to my symptoms and decided to go forward with the endo even tho my blood was only slightly indicating Celiac. My endo revealed heavy damage and the biopsy confirmed Celiac.

OH -- I had begun taking pictures of visual symptoms as over the years the docs would just nod, note my file and send me on my way over symptoms they could not see for themselves.

Although not my best photographs...I do believe the one of me looking 9 months pregnant in the evening compared with a slight tummy the next morning brought the visual back to the docs. Also had my first rash this past january, took pics of it because i couldn't get into dermatology for three months...rash lasted 6 weeks but i still have the photos to share -- turns out the rash was a key in diagnosing my celiac.

Good Luck and trust your gut (both meanings intended)!

Hi all, I am fairly new here and have a couple of questions. I have gone to my pcp and she did some blood work that she says is negative (tTG 11 units), I am not sure what normal is she wouldn't say. I have a classic looking DH rash so she wants me to see the dermatologist but wanted to wait on sending me to the GI doc since I don't clearly have any GI symptoms. Then the day after my blood tests came back her nurse called me to let me know that she they set up appointments for the dermatologist and the GI doc. So that confuses me because originally she wanted to wait on the GI.

So I went to the dermatologist who said that my rash does indeed look like classic DH, but because I am not underweight (15 lbs overweight :( actually), it's probably not DH. He did want to do a biopsy though and so he tested three places that day (stitches - ouch!) and I am waiting on results. Okay, here is my question. Is it possible to get a false negative on the skin biopsy?

And now for my dilemma. I have my appointment for the GI scheduled for this coming Friday, but my appointment with the dermatologist to get my skin biopsy results and stitches removed is not until next Monday. Should I wait on the results and move my appointment for the GI or keep them and just try to move things along? Any suggestions would be a great help for this newbie! Thanks.

Hydrokube Rookie

Ang: Just keep moving along, be sure to tell your GI doctor about the skin biopsies. I doubt you'd get into an endoscopy before the skin results come back anyways, so you can always cancel if it's confirmed unless you want an internal biopsy to be 100%.

I've never heard about false negatives on skin biopsies, and I don't know if it's 100%, but I think if it's not it's very close.

It sounds like you're on the right track.

darkhorse Apprentice
So I went to the dermatologist who said that my rash does indeed look like classic DH, but because I am not underweight (15 lbs overweight :( actually), it's probably not DH. He did want to do a biopsy though and so he tested three places that day (stitches - ouch!) and I am waiting on results. Okay, here is my question. Is it possible to get a false negative on the skin biopsy?

This really bugs me because the "classic" celiac symptom of being underweight is actually not that common. A scientific research study showed that most people are either normal weight, over weight, or obese at diagnosis. Only a small minority of celiac diagnosed people are underweight at diagnosis. Don't let your Dr.'s misinformation make you doubt what your body is telling you.

Here's the study information.

ohsotired Enthusiast
I've never heard about false negatives on skin biopsies, and I don't know if it's 100%, but I think if it's not it's very close.

Well, if they don't do the biopsies correctly to begin with, you will get negative results. They need to biopsy next to a lesion, not on the lesion/rash itself. If they biopsy on the lesion/rash itself, you'll get a 'negative' and a likely dx of 'psoriasis' or 'eczema'. :rolleyes:

Hydrokube Rookie

FYI, I was just reading a book on Celiac and it said that a positive biopsy of DH is conclusively Celiac. I just thought I'd follow-up before bed. Good night!

gfb1 Rookie
This really bugs me because the "classic" celiac symptom of being underweight is actually not that common. A scientific research study showed that most people are either normal weight, over weight, or obese at diagnosis. Only a small minority of celiac diagnosed people are underweight at diagnosis. Don't let your Dr.'s misinformation make you doubt what your body is telling you.

Here's the study information.

part of the problem that body weight faces as a 'classic' symptom of celiac disease, is that we live in industrialized countries and overeat everything. the original identification of celiac disease occurred among low-weight children consuming marginal diets (and, obviously, not growing).

so, yes. body weight is not necessarily a strict diagnostic criteria for celiac disease; yet, the malabsorption associated with the disease does lead an individual to have a lower body weight than they might if they were absorbing nutrients properly.

from the study you cited:

Of patients compliant with a gluten-free diet, 81% had gained weight after 2 yr, including 82% of initially overweight patients.

we eat entirely too much...

SLB5757 Enthusiast

Thank you GottaSki, Ravenwoodglass, and Hydrokube. I will definitely take all of your responses to heart and try and learn from your experiences :)~

I too have always been underweight (never over 102 my whole life), but recently gained 6 lbs. on Nexium over the past two months (first time trying Nexium). It would be my luck that I would see the gastro at my highest weight ever and he would decide that since I am gaining weight that I am most likely not celiac. I even brought to his attention that my whole life I went to the bathroom immediately after eating most every meal, have always been tiny and short, have had a stillbirth (miscarriages common in Celiac - don't know about stillbirths), and of course am always irritable and have the "brain fog.../etc etc etc. Add into that my many other food allergies and bloating/distention/gas/indigestion - it would just make sense to e that I may be Celiac. I will keep pressing forward and hope that the tests show something. I know in my heart that my first scope was not accurate because I was only eating rice and ensure for over a month. I had cinnamon applesauce occasionally - but that was it.

I think it will take a few weeks to get results from the Mayo Clinic labs...so lets hope for the best (answers). For now I just have to monitor and find out what to stay away from or what triggers the episodes that I have. I ate Wheat Thins last night (since they say I need to increase fiber and to NOT stop Wheat because I am not Celiac), and an Oreo Blizzard later in the evening and woke up with Diah. I really do not know if it was the Wheat Thins or Blizzard that did me in - but to say the least it's been a rough morning at work :(

Thanks for listening to me rant once again.

Ang615 Newbie
Well, if they don't do the biopsies correctly to begin with, you will get negative results. They need to biopsy next to a lesion, not on the lesion/rash itself. If they biopsy on the lesion/rash itself, you'll get a 'negative' and a likely dx of 'psoriasis' or 'eczema'. :rolleyes:

They did the biopsy on only one lesion, and 2 other spots on clear skin right next to a lesion. My instructions were to apply polysporin onto the stitches and keep it covered with a bandaid until I return for results, man oh man do I have a bad reaction to the bandaid. I actually think it is the adhesive. I can't wait to have all this done! :)

SLB5757 Enthusiast

OK....so I found out a few of the results - and it doesn't look like I have Celiac. Frustrating but good nonetheless. Basically I have had a number of tests run and all come back negative. Its not my Gall Bladder, Gastoparasis (sp), or Celiac...so I get the lovely IBS diagnosis. I now have to come to terms with the fact that I will have pain my whole life and have problems with eating....etc. Grrrrrrr.

My levels that came back were a total IGA of 266 which is perfectly normal, and the Endomysial AB was negative, and the AntiGiladin AB's were 1.5 and 2.6 which is very low and definitely Negative. The only tests still out are the reticulin tests and the TTG tests. I am most certain that those too will show negative results and I will just have to listen to the doc and go with IBS. So frustrating :(

ravenwoodglass Mentor
OK....so I found out a few of the results - and it doesn't look like I have Celiac. Frustrating but good nonetheless. Basically I have had a number of tests run and all come back negative. Its not my Gall Bladder, Gastoparasis (sp), or Celiac...so I get the lovely IBS diagnosis. I now have to come to terms with the fact that I will have pain my whole life and have problems with eating....etc. Grrrrrrr.

My levels that came back were a total IGA of 266 which is perfectly normal, and the Endomysial AB was negative, and the AntiGiladin AB's were 1.5 and 2.6 which is very low and definitely Negative. The only tests still out are the reticulin tests and the TTG tests. I am most certain that those too will show negative results and I will just have to listen to the doc and go with IBS. So frustrating :(

DO NOT take those tests as conclusive proof you do not have an issue with gluten. Please. My doctors reliance on negative blood work as conclusive evidence that I was not celiac delayed my diagnosis by many years and resulted in some permanent damage. Once you are done with all testing do give the diet a good strict try. Sometimes our bodies tell us what the tests cannot.

meganm75 Newbie

I'm getting blood work done on Tuesday! I've been keeping a food/episode journal for the past week.. I'm really scared of being misdiagnosed!

I'm seeing a new dr. I'm thinking before I get into all my symptoms etc maybe I should ask, "how much do you know about celiac", but then again I don't wanna be rude and insult his intelligence..

positive thinking, positive thinking that's what I keep telling myself!!

mushroom Proficient
I'm getting blood work done on Tuesday! I've been keeping a food/episode journal for the past week.. I'm really scared of being misdiagnosed!

I'm seeing a new dr. I'm thinking before I get into all my symptoms etc maybe I should ask, "how much do you know about celiac", but then again I don't wanna be rude and insult his intelligence..

positive thinking, positive thinking that's what I keep telling myself!!

I did that with a locum for my doc. Asked him if he was familiar with celiac, he said no, so I said,okay we won't go there. :lol:

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      I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they  are high in carbs.  I put on 25 lbs in a short amount of time.  Whole Foods are the best way to go but I struggle with this.  The cost of gluten free is also a problem.  I love black licorice but most have gluten.  My favorite chili seasoning as well.  The list is endless.  I take  Advil liquid gels and had no idea until I read this.  I hope you do better than I have done.  I feel I am destined to suffer daily no matter what.  My aunt didn’t take care of herself and died from complications.  I hope you can get on a good routine.
    • growlinhard1
      Thank you, I appreciate the response. I'm going to begin the gluten free diet and wait for the biopsy results. I feel fairly certain that it's the right thing for my well being. I will keep you posted.
    • Scott Adams
      The flu vaccine is indeed not 100% effective every year, as its effectiveness varies depending on how well the vaccine strains match the circulating flu viruses. However, even in years when the match is less than perfect, the flu vaccine still provides significant benefits. Studies consistently show that vaccinated individuals who contract the flu often experience milder symptoms, a lower risk of complications, and a reduced likelihood of hospitalization or death compared to those who are unvaccinated. For high-risk groups, such as the elderly, young children, and individuals with chronic health conditions, the flu vaccine remains a critical tool for reducing severe outcomes. Regarding the mention of risks associated with vaccines, it’s important to note that the flu vaccine is generally very safe for most people. Serious side effects are extremely rare, and the benefits of vaccination far outweigh the risks for the vast majority of individuals. If someone has specific concerns about vaccine safety due to medical conditions or allergies, they should consult their healthcare provider to discuss their options. As for alternative measures like a D Lamp (ultraviolet light disinfection), while these can be useful for reducing pathogens in the environment, they are not a substitute for vaccination. The flu virus spreads primarily through respiratory droplets, and personal protection measures like hand hygiene, masking, and improving indoor ventilation can complement vaccination but cannot replace its targeted immune protection.
    • trents
      Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.
    • growlinhard1
      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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