Upper Endoscopy Tomorrow

[lcolebank]

I was diagnosed with Ulcerative Colitis over 20 years ago . It has gone in and out of remission several times and has ranged from moderate to severe at times. Currently, it is in remission.

Around Christmas this year, I started feeling really bad. I was not having a UC flair. I was extremely tired, had terrible tingling in my feet (especially at night), would get dizzy and my brain seemed foggy. Lost of unexplained pains too. I had some blood work done and my GP said I had a low Vitamin D Level, Low B12, and borderline low thyroid. She suggested b12 shots and Vit D supplements. However, I was worried about what had caused the defiencies. I eat fairly healthy. I asked her to run a celiac panel. The IGA was negative but the gene test read:

HLA-DQ2 (Dqa1*5/Dqb1*02) Positive

HLA- DQ8 (DqA1*03/DQB1*0302) POsitive

My GP said with the problems I was experiencing that maybe a gluten free diet was a good idea for me even though she could not diagnose me with Celiacs based on this. I did the Gluten free siet for a few weeks but decided to go and see my GI doc. He said he would rather have more conclusive tests. He ordered a Quantitative Iga test and the endoscopy for tomorrow. I have been back on gluten for about three weeks. He thinks that should be okay.

I feel like I had already started to feel better from the short time I avoided gluten. Now, being back on gluten, I am constantly dizzy, tingling is back, I have so much gas. I do not get diarreah but get very bloated. My appetite is huge.

I guess common sense dictates, that no matter what the test results are tomorrow that a gluten-free diet is probably a good choice for me? But if the test is negative and my doc doesn't seem to think this is my problem...where do I go from here?

Thank you!

[IrishHeart]

let's add this up....

Positive DQ2 AND DQ8 genes PLUS

all those GI symptoms and UC PLUS

vitamin deficiencies, B-12 anemia PLUS

low thyroid PLUS

nueropathy PLUS

fatigue, pain, dizzy and foggy...PLUS...

symptoms improve on a gluten free diet??

Sounds like Celiac to me, kiddo!

MAKE SURE HE DOES A THOROUGH BIOPSY--AN ENDO WITHOUT THAT IS USELESS (My idiot GI failed to do this and cost me another year of ill health!!)

And yes, if I were you (and except for the UC--I WAS YOU--and many other symptoms!! )--- I would DEFINITELY stick to a gluten-free diet.

Just my humble thoughts. Best wishes!!

[lcolebank]

Thank you Irish Heart. Honestly, my biggest worry is a negative test tomorrow. I know I can do this if I hear a positive result but I know I also know my will power might fail me if I have doubts. I think that is the single most frustrating thing about this disease...a jury would hardly ever convict...almost always a shadow of a doubt! ;-)

I am having a farewell Pizza and beer dinner tonight....

[IrishHeart]

Thank you Irish Heart. Honestly, my biggest worry is a negative test tomorrow. I know I can do this if I hear a positive result but I know I also know my will power might fail me if I have doubts. I think that is the single most frustrating thing about this disease...a jury would hardly ever convict...almost always a shadow of a doubt! ;-)

I am having a farewell Pizza and beer dinner tonight....

Have a slice and few pulls for me

Seriously, though....please don't screw around with this...positive genes and all those symptoms??...sorry, kiddo...that's gut involvement and it's for real. You don't have vitamin deficiencies for "no reason".

it's okay...we're a fun bunch to hang with

In the end, test results or not??...it's your body and your life and your choice to feel lousy or good. You're the one who determines what you do to stay well.

and TEST RESULTS ARE OFTEN WRONG.

I will offer you this thought, though. If you do NOT go gluten free, you may be risking WORSE symptoms. Lots of people can you tell you horror stories. I was so bad at one point, I felt death might be easier --my life was hell for 3 years preDX... with debilitating joint/muscle/bone pain, massive muscle mass loss, insomnia, serious cognitive issues, burning neuropathy--my whole body was on fire--and a drastic weight loss of 90 lbs, GI symptoms that include a burning mouth, throat and right down to you know where, and pain you cannot imagine. I can't sleep more than an hour or sit more than 20 minutes without pain and burning......I am rebuilding my body slowly and face years of physical therapy to regain my legs, arms, stop the pain in my neck and regain muscle...I suffer and can take no medications...my hair fell out...shall I go on??? You don't wanna "go there" believe me. I think you know what could happen, so I won't belabor it.

But for right now...enjoy your evening and tomorrow, see what happens. Good luck and hopefully, you'll come back and tell us what happened

[lcolebank]

You know, I have not gotten as out of hand as what you are describing but I am increasingly frustrated by my health. I honestly feel crappy and crabby most of the time. I have been on anti-depressants but I know I am not depressed. I really do feel bad. I know that I have to make changes and I am prepared to do so. There will be no fooling around. I let myself have this few weeks of beer, pizza and cookies and after tomorrow.... well, I am back on my mission to becoming a much healthier happier version of myself. I Don't want my kids to remember me as a Mom who laid in bed all the time because she was too tired to play with them.

I know the gluten-free lifestyle isn't easy but if I start to feel better I know it will be incentive to keep it up. Like I said...the best news I could get tomorrow is a positive test. If it isn't, I am going to have to work a lot harder to make myself stick to it. I am not praying to be sick...just to be diagnosed.

Thank you for sharing your story. I hope your struggles are getting easier and your quality of life is improving.

[Takala]

We have "beer, pizza, and cookies" but they are just gluten free versions.

Actually I don't like beer very much, and I can't do much sugar so lots of regular cookies don't really appeal to me, but we can have them if they are made with whatever we can eat. This isn't deprivation, it's just different.

Re this depression thing: most serotonin which influences mood is made in the gut. If the gut isn't working properly, then you will have trouble being happy. And malnutrition because of lack of healthy villi will effect how the various hormones and glands interact with each other and nourish the brain.

Many cravings are made worse by lack of nutrition. The food's not getting processed the correct way.

With all those symptoms and the gene test showing that stuff, you're pretty classic as a candidate for success on a gluten free diet. I think you do have the will power, you just don't realize it yet what it feels like to eat and have it not make you feel bad.

[IrishHeart]

Well, now that you have added MORE symptoms you suffer to the conversation, I definitely recommend you stay gluten free!!

and yes, we can eat pizza, cookies, beer (well, hubby does)--in moderation--they are just gluten-free!! It's just the "new" normal, that's all.

It's the ticket to good health, not a punishment.

TAKALA said all I could possibly add.

Vitamin and mineral deficiencies as a result of blunted villi affect those central nervous system neurotransmitters of seratonin and norepinephrine and vitamins B and D, etc....which means those bad moods and fatigue will just continue as long as you keep eating gluten-filled foods. All the anti-depressants in the world won't help if that continues. It's just that simple.

I think of gluten as kryptonite. And Supergirl can't fly when kryptonite is around.

You can do it--it's worth it to feel better!!

[lcolebank]

I got a part of my labs back this morning online. From what I understand (which is not much) they look to be in the normal range. The test is just called IGA - it says mine is 190 out of a normal range of (40-350). The tests for the transglutaminase ab igg/iga are online but the results are not listed - which means she got the results but hasn't put them in my records yet. My ttg anitbody iga was <3 and my endomysail lab was negative too...

Test is at 11:30... I will be back with results...Thanks for your input/support.

[lcolebank]

Well.... My Doctor (That I do not plan on using anymore) mailed me results for my biopsies. It is a photo-copied sheet with x's by the appropriate boxes.

I am negative for bacteria that causes ulcers.

Biopsies were negative for H. Pylor infection...

Then, he listed options for my indigestion and and gas... (Which were never chief complaints)

I am so beyond frustrated. There is not a single mention of Celiacs on the whole page. And he will not call me back.

Before they gave me medicine to relax me before the endoscopy, he asked if I had questions. I asked him if the biopsies were negative, how would he suggest I proceed, he ignored me and said he would refer me back to my GP...that it probably wasn't GI related...

[love2travel]

Thank you Irish Heart. Honestly, my biggest worry is a negative test tomorrow. I know I can do this if I hear a positive result but I know I also know my will power might fail me if I have doubts. I think that is the single most frustrating thing about this disease...a jury would hardly ever convict...almost always a shadow of a doubt! ;-)

I am having a farewell Pizza and beer dinner tonight....

Irishheart is chock full of kindness and wisdom!

I would be adamant that the surgeon takes at least 8-11 biopsies. I attended a celiac lecture a month ago where a leading Canadian celiac expert (she is a gastroenterologist)said that only 39% of all biopsies in Canada for celiac are done CORRECTLY! So, that means 61% are done INCORRECTLY. That is huge. She said there are tons of people with false results walking around thinking they do not have celiac or gluten intolerance who actually do. I find that absolutely appalling. I suspect it would likely be similar or perhaps somewhat better in the US but still!!

Good luck for tomorrow! Really, really savour that pizza!

[ravenwoodglass]

Well.... My Doctor (That I do not plan on using anymore) mailed me results for my biopsies. It is a photo-copied sheet with x's by the appropriate boxes.

I am negative for bacteria that causes ulcers.

Biopsies were negative for H. Pylor infection...

Then, he listed options for my indigestion and and gas... (Which were never chief complaints)

I am so beyond frustrated. There is not a single mention of Celiacs on the whole page. And he will not call me back.

Before they gave me medicine to relax me before the endoscopy, he asked if I had questions. I asked him if the biopsies were negative, how would he suggest I proceed, he ignored me and said he would refer me back to my GP...that it probably wasn't GI related...

I would call the office and ask if you had biopsies done for celiac at all. You may have gotten an incomplete report and the celiac biopsies may be on another page or....you doctor may not have done them for some reason.

Now you should try the diet very strictly for at least a couple of months and see if it helps. With the high rates of false negatives on testing there are many who get relief even though the test results are negative. Your body know the answer.

[IrishHeart]

Well.... My Doctor (That I do not plan on using anymore) mailed me results for my biopsies. It is a photo-copied sheet with x's by the appropriate boxes.

I am negative for bacteria that causes ulcers.

Biopsies were negative for H. Pylor infection...

Then, he listed options for my indigestion and and gas... (Which were never chief complaints)

I am so beyond frustrated. There is not a single mention of Celiacs on the whole page. And he will not call me back.

Before they gave me medicine to relax me before the endoscopy, he asked if I had questions. I asked him if the biopsies were negative, how would he suggest I proceed, he ignored me and said he would refer me back to my GP...that it probably wasn't GI related...

???? Not GI-related??? HE said HE was going to do the proper testing and then, he didn't do it?? WTF???

You have got to be kidding...ARRGH#@!(*&!!!....This is what happened to me. I am so sorry this happened to you.

perhaps there is more to this report, as Ravenwood suggests...?

Go to the OFFICE and GET a FULL copy of the report and ask WHY the biopsy for celiac was not done. I would. And I would get another GI doctor. This is WHY so many go undiagnosed in this country--INCOMPETENCE!!

Man, I am so pissed off FOR you!

It's up to you of course, but if I were you, I would remain gluten-free-- as you have felt better off it and your genetic test is positive. MANY of us have NEGATIVE blood tests and we are celiacs, nonetheless. We have to take care of ourselves, IN SPITE of the "medical care" we get.

[lcolebank]

I left yet another message and the medical records clerk called me back and said they would make a copy of my file for me to pick up! The nurse or doctor never bothered to call. My husband finally got a nurse on the phone and she said the biopsies did not show any damage. However, in my doped up haze I swear he said he only took four or five biopsies.

I am so appalled at this clinic. He never he mentioned the possibility of an intolerance/ false negative / etc.

I do not mind going to another Doc at all. I am for sure done with this one. However, I don't know where to go.

This doctor has me questioning myself... He said all of of my vitamin defiencies were borderline and disregarded the other symptoms.

My B12 was 272

Vitamin D was 25

T4 Free - .69

TSH .85

dq2 (dqal*05/dqb1*02) Pos

Dq8 (dqa1*03/dqb1*0302) pos

IGA tests were negative

My main symptoms are dizziness, tingling in feet, tired, constipated with occasional bloody stools, foggy brain, irritability, and gas.

How did you all find the right Doctor? Opinions on whether this is Celiac/gluten related?

[lizard00]

Wow, just reading this makes me frustrated!

I recently had an EGD done for some GI issues I was having. They did biopsies to make sure that celiac was under control. I got a letter from him saying everything was fine, villi normal, etc.

During this process, I stepped back and realized that I had been doing a lot of grabbing food from places that I thought were ok. But what was once a now and then occurrence was turning into a couple of times a week... so I was getting trace amounts. I cut all of that out and started to feel better in about 2 weeks.

Fast forward to yesterday, I had my follow up with the doc after ALLLLLL the testing. When I actually spoke with him, he told me that they did see a couple of patches of villi blunting, but nothing that he would consider to be active celiac. It all made sense to us both.

They have a threshold of damage that they are looking for, and unfortunately, for a lot of doctors, if you aren't over that, you're fine. It's too bad he won't talk to you, he could possibly give you the little details like that. As for doctors-- this is the second GI I went to. The first guy was an a$$ and helped me ZERO. I don't know where you are, but if you can find another doctor, find one. There's a whole thread on here with people's recommendations. Maybe that's a place to start?

[lcolebank]

I contacted the Arkansas support group contacts and asked for reccs on docs. I am just so frustrated. I feel like I have wasted so much time and money (and discomfort). I am not sure that I really need to hear from the DOC that I have celiacs but I am worried that there is something else I should be checking into...

[ravenwoodglass]

I left yet another message and the medical records clerk called me back and said they would make a copy of my file for me to pick up! The nurse or doctor never bothered to call. My husband finally got a nurse on the phone and she said the biopsies did not show any damage. However, in my doped up haze I swear he said he only took four or five biopsies.

I am so appalled at this clinic. He never he mentioned the possibility of an intolerance/ false negative / etc.

I do not mind going to another Doc at all. I am for sure done with this one. However, I don't know where to go.

This doctor has me questioning myself... He said all of of my vitamin defiencies were borderline and disregarded the other symptoms.

My B12 was 272

Vitamin D was 25

T4 Free - .69

TSH .85

dq2 (dqal*05/dqb1*02) Pos

Dq8 (dqa1*03/dqb1*0302) pos

IGA tests were negative

My main symptoms are dizziness, tingling in feet, tired, constipated with occasional bloody stools, foggy brain, irritability, and gas.

How did you all find the right Doctor? Opinions on whether this is Celiac/gluten related?

Yes your problems could be gluten related. False negatives are all too common. Your B12 is quite low. The old cut off was 250 but many doctors are now telling folks to supplement if it is under 500. You are positive for both common celiac associated genes so it would be a good idea to do a good strict trial of the diet for a bit to see if the diet helps. Also did they do a total IGA? If you are low on the total IGA it means any IGA testing for celiac would be negative. Being on the gluten free diet is not going to impact testing for other problems. It will only effect the testing for celiac. Since you have had both blood work and biopsy now is the time to try the diet and see if it helps.

[IrishHeart]

Your vitamin D is LOW.

Your B-12 is LOW.

Your TSH is suggesting HYPERthyroid. (.8 is towards HYPER, not HYPOthyroid)

All of these test results could explain your tingling, fatigue, constipation, etc.

Your genetic test is double positive for BOTH DQ2 and DQ8.

All these things add up to gluten-related complications.

So, YES... it is my opinion you need to be gluten free.

My wacky thyroid stopped misbehaving once I went gluten-free. But, if these symptoms persist, you may want to see an endocrinologist for the thyroid.

Call the local celiac support group in your area and ask for a recommendation to a trusted doctor--or ask the people on here. Best wishes!