Newbie With Questions.

[strongwilledwoman]

Hi Everyone,

 

I just got a call from my Dr.'s office that my blood tests were suggestive of Celiacs disease.  I have Lupus and I know this is another autoimmune disease.  They said I have to see a GI specialist to confirm the diagnosis.   I was told to expect a call from a GI specialist tomorrow.  Can you please tell me how they confirm that it is Celiacs.  I cannot take the stomach pain much longer and hope to get a confirmation soon.

Thank you in advance for any information you can give me.  

[guest134]

In the United States and Canada, Celiac is confirmed by a biopsy, this is very important for others with autoimmune diseases. The reason being is that other A.I diseases can cause a false positive on Celiac blood tests so the positive results must be confirmed with clinical presentation/Biopsy. You may have learnt by now that A.I diseases can commonly be linked to one another and that undiagnosed Celiac can cause other diseases to crop up. The good news is that if you do have Celiac many members on this board have had great success with not only their Celiac symptoms but the symptoms of their other A.I diseases as well upon going gluten free. 

Don't be afraid of the endoscopy/biopsy, I scared the life out of myself before the procedure and couldn't believe how easy it was. I remember when the doctor took the tube out of my mouth I said "Is that it?" 

[strongwilledwoman]

In the United States and Canada, Celiac is confirmed by a biopsy, this is very important for others with autoimmune diseases. The reason being is that other A.I diseases can cause a false positive on Celiac blood tests so the positive results must be confirmed with clinical presentation/Biopsy. You may have learnt by now that A.I diseases can commonly be linked to one another and that undiagnosed Celiac can cause other diseases to crop up. The good news is that if you do have Celiac many members on this board have had great success with not only their Celiac symptoms but the symptoms of their other A.I diseases as well upon going gluten free. 

Don't be afraid of the endoscopy/biopsy, I scared the life out of myself before the procedure and couldn't believe how easy it was. I remember when the doctor took the tube out of my mouth I said "Is that it?" 

Thank you sooo much for your response.  I was concerned about what it would entail and you have really helped.  I just got the Lupus diagnosis a couple of years ago and I only just accepted it recently.  Your help means a lot to me.

[Marilyn R]

Hi StrongWilledWoman, and welcome to the forum.

 

I have Lupus too.  The biopsy is a walk in the park, they give you that drug that Michael Jackson was addicted to.  If you're close to 50 years old, you might want to ask that they knock out a colonoscopy during the same procedure.

 

Sending you purple hugs!  ((( )))

[strongwilledwoman]

Hi StrongWilledWoman, and welcome to the forum.

 

I have Lupus too.  The biopsy is a walk in the park, they give you that drug that Michael Jackson was addicted to.  If you're close to 50 years old, you might want to ask that they knock out a colonoscopy during the same procedure.

 

Sending you purple hugs!  ((( )))

Hi, So nice to meet another Lupie here.  From what I understand, if you have one autoimmune disease your chances are higher to have other autoimmune diseases.  I am just over 50 and had a colonoscopy last year, i thought that would have shown if I had Celiacs but later found out I was mistaken.  At the time of the Colonoscopy the GI doctor said he was going to test for Celiacs as well.  As the symptoms progressed, I found out from my Primary doctor that he never did any testing for Celiacs.    Glad to meet you and sending purple hugs your way too!  Thank you for replying, it is nice to know I am not alone!

[Marilyn R]

Wow. 

 

Do you live in an area/have insurance that you can change GI's?  Your story really upsets me!

 

The good news is that even though it's not an easy fix, if it is celiac disease, a diet and change in habits can make a big, big difference in your quality of life.  It surprised me that your primary doctor discovered this, he/she sounds like a keeper!   I'd personally search for a new G.I. if you can, and tell him and his staff why so that you can share the knowledge.

 

I don't know what disease came first for me, it took me a long time to get diagnosed with Lupus.  I wonder about it and conclude it's like wondering if the chicken or egg came first.  (But deep down I think it was undiagnosed celiac disease.)

((( )))

[guest134]

A colonoscopy covers the entire colon but does not go past it, Celiac is in the small intestine. Therefor to expect a colonoscopy to find Celiac makes no sense. I agree with Marilyn that you should shop around for G.I's because if he thought he could find Celiac with a colonoscopy he will also probably be the type to take 1-2 biopsies and call it sufficient. 

It is your money and your health, these procedures are the livelihood of the doctors so they will listen. I straight up told mine to take at least 6 biopsies or tell me now that he won't so I can walk out and go to someone else, luckily mine was very well versed on Celiac and agreed. 

Also if you feel like gluten is causing your problems and you feel better without it then who is any doctor to tell you otherwise? You may not have Celiac but that doesn't mean you aren't gluten intolerant and it could be aggravating your lupus as well as your stomach.

Good luck and keep us updated. We are here for you whenever you need some support/info.

[strongwilledwoman]

Thank you toworryornottoworry and Marilyn R.  I already feel better and you have made me feel very welcome.  I really appreciate that you are sharing your knowledge with me on this.  This is a new area for me and I really do not know much about Celiacs.  My primary doctor is incredible, he is very kind and very thorough.  As far as the GI doctor goes, I should have went with my gut, (no pun intended).  I didn't really care for him right from the start.  When my primary doctors office called yesterday, they said they had put in an order for a GI doctor to call me today.  I will definitely research this doctor.  

I have another question, why do they need so many biopsies?  And what are they looking for?

Thanks again for all your help and I promise to keep you updated.  

[Marilyn R]

It's like giving your GI a panoramic shot vs a picture. 

 

You know how you can take 8 photos, 7 of them turn out bad but you get 1 you love?  This is the reverse. 

 

You're a survivor, your villa are being valient, but some of those soldiers may have layed down. 

 

That's how your (homefully improved) GI will find out.  He'll look for little soldiers waving (under the microscope) to see what's going on in there.

 

The procedure will not be better or worse depending on the numer of biopsies taken.

 

Wish you well!

[guest134]

The endoscopy will look for obvious things that are visible to the naked eye such as cancers, ulcers, gastritis, inflammation, etc... Sometimes people with Celiac will have bad enough damage that their intestines are off up to the naked eye, most cases however will not have visible damage just yet (maybe mild inflammation.) This is where the biopsy comes into play, the biopsy will remove small pieces of tissue in your intestines as the G.I guides the tube through (sounds painful but it isn't) and these samples are sent to a lab to be looked at under a microscope.

As Marylin pointed out the damage of Celiac can be patchy so 1-3 biopsies is not sufficient. The Chicago center of Celiac disease states "Multiple tissue samples are vital to an accurate diagnosis. Celiac disease can cause patchy lesions in the duodenum, which can be missed if only 1 or 2 samples are taken. Research shows that when only 2 duodenal biopsies are obtained, diagnosis is confirmed in 90% of cases. However, 3 and 4 biopsies increased detection to 95% and 100%, respectively." - Open Original Shared Link

It is in my personal opinion that 6-8 should be taken because at that point you can be assured that, at least at the current time, there is no damage to your villi. 
 

[nvsmom]

Sorry to hear of your diagnosis but welcome to the board.

 

Keep eating gluten until you are sure all testing is done. Hopefully you see the GI soon.

 

Not all doctors require a biopsy to confirm celiac disease now a days. Some doctors go with just the blood tests (especially if more than one was positive) and a positive reaction to the gluten-free diet.  The usual tests run are:

 

• total serum IgA
• ttg IgA and ttg IgG (most common but not as specific to celiac as other tests)
• EMA IgA (a titre that indicates extensive damage of the gut)
• DGP IgG and DGP IgA (newer tests that are fairly specific to celiac)
• AGA IgG and AGA IgA (older tests)

If you have positive tests in a few tests, the doctor may not want a biopsy. i personally skipped the biopsy because I had strongly positive ttg IgA and EMA IgA tests. I've done well on the diet so I'm confident celiact is what it was.

 

If possible, get a copy of your labs. Not all doctors are "on the ball" when it comes to celiac. It's possible that one doctor will declare a patient positive with a mildly positive ttg IgA where as others could say results are "suggestive of celiac" with two or more strongly positive tests.

 

You might want to ask you doctor to test your nutrient levels. calcium, iron, ferritin, B12, D, potassium, and a (I think) a few others are often low in celiacs and could affect your feelings of wellness. Thyroid function is often affected too. If you think it could be an issue request tests in TSH (should be close to a 1), Free T4 and Free T3 (should be in the upper 50-75% range of your lab's normal reference range) and TPO Antibodies (should be basically a zero).... These are more tests that you should get copies of as many many doctors won't recognize subclinical hypothyroidism since they won't look past their lab's TSH reference ranges.

 

As an aside, I am waiting to see a rheumy too because I suspect lupus. We have a real shortage of rheumy's in Alberta though, and I've been waiting 5 months just to hear when I'll get my first appointment... Needless to say, my last attack/flare of autoimmune symptoms have passed again.  LOL    Anyway, Celiac (and Hashi's) have many symptoms that are similar to lupus but manyy of my lupus-like symptoms are recently starting to improve. The swelling, pain, fatigue, hairloss, migraines, neuropathies can all be linked to celiac too... hopefully you'll get some further relief from symptoms that were thought to be lupus; just give it time as neuropathies and pain can take months to improve.

 

Best wishes. 

[strongwilledwoman]

Sorry to hear of your diagnosis but welcome to the board.

 

Keep eating gluten until you are sure all testing is done. Hopefully you see the GI soon.

 

Not all doctors require a biopsy to confirm celiac disease now a days. Some doctors go with just the blood tests (especially if more than one was positive) and a positive reaction to the gluten-free diet.  The usual tests run are:

 

• total serum IgA
• ttg IgA and ttg IgG (most common but not as specific to celiac as other tests)
• EMA IgA (a titre that indicates extensive damage of the gut)
• DGP IgG and DGP IgA (newer tests that are fairly specific to celiac)
• AGA IgG and AGA IgA (older tests)

If you have positive tests in a few tests, the doctor may not want a biopsy. i personally skipped the biopsy because I had strongly positive ttg IgA and EMA IgA tests. I've done well on the diet so I'm confident celiact is what it was.

 

If possible, get a copy of your labs. Not all doctors are "on the ball" when it comes to celiac. It's possible that one doctor will declare a patient positive with a mildly positive ttg IgA where as others could say results are "suggestive of celiac" with two or more strongly positive tests.

 

You might want to ask you doctor to test your nutrient levels. calcium, iron, ferritin, B12, D, potassium, and a (I think) a few others are often low in celiacs and could affect your feelings of wellness. Thyroid function is often affected too. If you think it could be an issue request tests in TSH (should be close to a 1), Free T4 and Free T3 (should be in the upper 50-75% range of your lab's normal reference range) and TPO Antibodies (should be basically a zero).... These are more tests that you should get copies of as many many doctors won't recognize subclinical hypothyroidism since they won't look past their lab's TSH reference ranges.

 

As an aside, I am waiting to see a rheumy too because I suspect lupus. We have a real shortage of rheumy's in Alberta though, and I've been waiting 5 months just to hear when I'll get my first appointment... Needless to say, my last attack/flare of autoimmune symptoms have passed again.  LOL    Anyway, Celiac (and Hashi's) have many symptoms that are similar to lupus but manyy of my lupus-like symptoms are recently starting to improve. The swelling, pain, fatigue, hairloss, migraines, neuropathies can all be linked to celiac too... hopefully you'll get some further relief from symptoms that were thought to be lupus; just give it time as neuropathies and pain can take months to improve.

 

Best wishes. 

I want to thank you all so much.  I already feel more in control with the information I have gained on this board.  I am definitely going to ask for a copy of my tests as well as insist on 6 - 8 biopsies.  I found out the GI they sent my information to a couple days ago is the same GI who did my colonoscopy well over a year ago and told me he would be checking for Celiacs.  They still have not called me to set anything up and I will not go back there.  When I called my primary doctors office today, they said he has not gotten back to them either.  Once I found out it was the same GI Dr. I let them know that I will call them tomorrow with a different GI doctors name to send my information to.  I need to know it will be someone who will stay on top of things and follow up in a timely manner.  I am at the point now that I am barely eating because the pain is so bad.  I can't thank all of you enough and will keep you all posted.  Your support means so much to me.

[Marilyn R]

Hugs ((( ))) to you across the miles and cyberland....hang in there, it WILL get better.  (Swear that from the bottom of my heart.)

 

You didn't ask, but a hot epsom salts bath soak (throw in some baking soda too) can help for the pain.  I usually play Eagles, but any good music you love works too.  Peppermint tea helps for nausea, as well as ginger in any form, even Ginger Ale.  Good luck.

 

((( )))

 

PS, If you have a PPO, you don't need a referral to a Gastro, in case you don't know.  When I had my upper and lower done on the same day, the RN told me I was lucky I got the Dr. I chose.  She said every other gastro in town orders the procedures on separate days, becase they  get more revenue, and so did the Surgical Center, Annesthesiologis....sad.  Maybe it was a clerical error in your Gastro's office that you didn't get scheduled for an endoscopy after the colonoscoy, hope not.

[GFinDC]

Hi SWW,

 

This biology site has some info on the villi and the small intestine, including the other digestive organs.  The villi info is half way down the page or so.

 

Kimball's Biology pages

Open Original Shared Link

 

I don't know if they have Pepto Bismol where you are but it may help relieve some of the pain.  Plain old aspirin can help some also.  Avoiding dairy and sugar and starch may help as well as those items can cause gas and bloating, which can increase pain in damaged guts.

[strongwilledwoman]

Thank you Marilyn R and gluten-free in DC, last night I put a heating pad across my stomach and that really helped a lot.  It took the edge off the pain.  And gluten-free I checked out the site you posted and now I can see what they are talking about and what they are looking for, that was very helpful.  I tried calling around for another GI doctor today and some were not taking new patients, one was a pediatric GI doctor and I left a message to ask him to recommend someone, but he didn't call back yet.  I finally gave in and called the GI doctor that I do not like as I know he already has been submitted my info and just got an answering machine.  I let them know I am desperate and can only eat a very small amount at a time and after I eat it just makes the pain that much worse.  I wait until I am actually shaking before I eat because I know it will hurt.  Guess what.....they never called back.  I am really at my wits end here.  I will try calling back to my primary tomorrow to see if he can do anything more.  Just very discouraged right now.  Thanks again for all the support.

[GFinDC]

Hi SWW,

 

That's a bummer that they aren't getting you in fast.  My appointment with a celiac specialist took 4 months here.  I never did the endoscopy since I went ahead an started the gluten-free diet while I was waiting.  I was working at the time and being sick and not able to sleep was not good for work.

 

I do have a couple more suggestions, but I don't know how much they will help.  While you are waiting for the endoscopy you don''t need to eat a whole lot of gluten.  Usually they say a couple slices of wheat toast will do it.  Marshmallow root and okra are both muscillagenous and may help soothe the gut a bit.  Some alcohol before bed can take the edge off the pain and may help you sleep.  Melatonin can help with sleep too.

 

I used to lay on my right side for 15 minutes and then my left side for 15 minutes and so on to help get things moving in the guts.  Or do bends or stretches.  Whatever works for you is worth trying.  There is also Enterolab stool testing.  It is somewhat controversial but may be an option worth considering.  A capsule endoscopy is another way to go.  But they can only take pictures with them, not get biopsy samples.

 

Hang in there and I hope the doctors get back to you soon.

[strongwilledwoman]

Just a quick update.  I am seeing two GI specialists on Tuesday morning.  I had to really complain a lot to get this appt.  My husband ended up calling the primary doctors office as well and that made them finally call me back.  I told them they were sending me to the same GI doctor who had dropped the ball a year and a half ago and I would not see him again.  By the end of yesterday, they called and had this new appt set.  Just wish it could have been easier to get this done.  I will keep you posted on what happens Tuesday.

Thank you again for all your support.

[strongwilledwoman]

Hi All,  Just a quick update regarding my appointment that I had yesterday.  The doctors were awesome!  They wanted to schedule my Endoscopy for Friday morning but I have to be off a few of my meds for 5 - 7 days before they can do it.  So they scheduled me for 9:00 AM next Monday.  They were so nice and really wanted to do this asap, as they knew I was supposed to have been tested a year and a half ago with the last GI doctor. (the funny thing was, as I was on my way home from this appt. the old GI doctors office called and said they received paperwork on me from my primary doctors office, I told them that the paperwork had been faxed over a week ago and to forget it, I was going somewhere else).  

I did ask the new GI doctors how many biopsies they would take as was suggested and they said 6.  I was really happy with that as that was one of the things I learned on this board.   I am excited to get this over with and get some results, whatever they may be.   Thank you all again and I will post again after Monday.

[GFinDC]

Hi All,  Just a quick update regarding my appointment that I had yesterday.  The doctors were awesome!  They wanted to schedule my Endoscopy for Friday morning but I have to be off a few of my meds for 5 - 7 days before they can do it.  So they scheduled me for 9:00 AM next Monday.  They were so nice and really wanted to do this asap, as they knew I was supposed to have been tested a year and a half ago with the last GI doctor. (the funny thing was, as I was on my way home from this appt. the old GI doctors office called and said they received paperwork on me from my primary doctors office, I told them that the paperwork had been faxed over a week ago and to forget it, I was going somewhere else).  

I did ask the new GI doctors how many biopsies they would take as was suggested and they said 6.  I was really happy with that as that was one of the things I learned on this board.   I am excited to get this over with and get some results, whatever they may be.   Thank you all again and I will post again after Monday.

 

Sounds great SWW!  That's wonderful that the new GI can get you in so quick.   The test results may take awhile to get back, like 10 days or so.  Here an article about non-celiac wheat sensitivity to read while you are waiting.  This is another possibility even if celiac testing is negative.  Unfortunately they don't know a lot about it yet or what all the effects are over time, but they do know it can cause similar symptoms.

 

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

[strongwilledwoman]

Sounds great SWW!  That's wonderful that the new GI can get you in so quick.   The test results may take awhile to get back, like 10 days or so.  Here an article about non-celiac wheat sensitivity to read while you are waiting.  This is another possibility even if celiac testing is negative.  Unfortunately they don't know a lot about it yet or what all the effects are over time, but they do know it can cause similar symptoms.

 

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Hi GFinDC,   What a great article.  It was very informative and well written.  Also, thank you for letting me know that the results take a while to come back, that was a question I forgot to ask.  In the meantime, would you suggest that I go on a gluten free diet after the testing or is there any further testing that would need to be done that would require me to keep eating gluten?  THank you again for sharing your knowledge with me.  I really appreciate it.

[GFinDC]

Hi SWW,

 

It should be ok to start the gluten-free diet after the endoscopy.  We did have a poster once who said the lab lost her test results and she had to go back on gluten for a new test.  But that is very unusual.  Other tests they should do are vitamin and mineral levels.   A bone density test might be a good idea too.  But the first treatment for a low bone density should be the gluten-free diet. People with celiac disease tend to develop low bone density, probably due to mal-absorption of minerals and important stuff like that.  But you wouldn't need to be eating gluten for those tests.  So, yes, go gluten-free after the endoscopy is my thinking.  If you do have a gluten reaction, it may take a while for the symptoms to start going away.  Some people actually report worse symptoms after going gluten-free, at least for a while.  Our bodies go through a healing process after stopping gluten, and the symbiotic bacterial flora change in out guts when we change their diet also.  So there is good reason to start taking some pro-biotics.  I put together a list of tips for people to try and help them get started on gluten-free below.  I'm glad to try and help. May the Lord keep you and bless you, in Jesus name.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

[strongwilledwoman]

Hi All,  Well, the Endoscopy this morning went fine. Feeling good.  I was told to call back in a week to 10 days for results.  Until then I am to follow a gluten free eating plan.  I am in the process of figuring that out.  LOL.  Looks like it is not an easy thing to figure out.  I did print out some information from this site and am going to try and do my best.  I will let you know when I get the results back.  I would never have even the slightest understanding of Celiacs without all your help.  Thank you again.