Impatiently waiting for scope results

[blueeyedapple]

I am new to the boards, hello everyone.

For the past 8 or 9 years I have had symptoms that were getting progressively worse.  I assumed it was IBS and stress and never even told my doctor about it.  I didn't just wake up one day feeling horrible, it snuck up on me.  Finally, my daughter-in-law was diagnosed with celiac disease as part of a study (she is also type one diabetic) and that started conversations and research.  I initially dismissed the idea that I could have celiac disease because no one else in my family has ever been diagnosed with it but I finally decided to ask my doctor for the blood test just so I could stop thinking about it.  I was sure it would be negative.  It wasn't.

My blood test results came back with the TTG IgA at 45.5 (the normal range for this lab was listed as less than 12) and my Deamidated gliadin peptide ab IgG was 11.2 (normal range also listed as less than 12).

My daughter is travelling abroad for a year and she has also had GI issues so she got a blood test.  Her TTG IgA was 68 (reference range is normal under 15) and her IgG was 11 (normal under 7, they used a different test).

I had a scope a week ago, the doctor said that my small intestine looks normal but he did mention that the damage is not always visible to the naked eye.  I am impatiently awaiting my test results.

My symptoms are diarrhea almost every day, sometimes I won't go for days but when I do it is diarrhea again.  Pardon the TMI but it ranges from flat out water to paste, it is almost never solid.  My vitamin D is deficient but my iron is ok, I am tired, I have eczema, I have chronic idiopathic hives for the past 6 years or so (that has been fun), I feel weak and heavy for lack of a better way to describe it - I can do the things that I need to do but I don't feel like I can and it takes all my motivation to actually get up and do them.  I have pain in my upper abdomen about an hour after I eat anything containing gluten (it does not occur when I do not eat gluten) and it is my husband that noticed that one, he says about an hour after we eat I start complaining that I don't feel well.  The bloating is amazing, the gas is room clearing, I have headaches or migraines regularly (2 or more times per week), I can't concentrate, my memory is horrible, I am irritable and my joints hurt. I also have restless leg syndrome

So my question is, is it likely that I have celiac disease when the IgG is not outside of the normal range?  Has anyone else had this? I expect that with both myself and my daughter testing positive for TTG IgA the likelihood of not being celiac is slim but I think at this point I am afraid that the scope will come back negative and then I am stuck with a "then what is wrong with me" situation.  I never expected the blood test to come back positive but I have made peace with this.  I did go gluten free starting yesterday and there was no pain after eating.

The waiting is killing me.  I am not a patient person :S 
I just want to feel normal again.

[squirmingitch]

Firstly, you weren't given the full celiac blood panel. You were given the "screening" panel. The full panel consists of 6 tests & you only had 2. It doesn't matter that your DGP IgG was within reference range. A positive is a positive; one does not have to test high on ALL the tests. As a matter of fact, I've never seen anyone come on this site who tested positive to every single one of the 6 tests.

Your symptoms are classic. I would be amazed if your pathology comes back negative!

It sounds like you got super lucky in getting a GI who actually knows what they're doing. YAY!!!! I hope he took 4 to 6 biopsies but from your statement of him saying the damage is not always visible; it sounds like he's abreast of the situation.

Have you had a full thyroid panel done? If not, you should.

So welcome to the club! The good news is that you will be feeling much, much better! It won't happen overnight & it can be a real rocky road like a roller coaster for the first 6 months or so but once your gut heals, all those symptoms will go away. I had migraines for 30 years. Now I can't tell you the last time I had a migraine. And ohhhhhhhhhhhhhhhhhhhh the bloat! No more. Fatigue can be devastating; that will improve too. Your memory will improve as well. those hives may go away too. It's just possible they are actually dermatitis herpetiformis (dh) which can present in a number of ways - many times mimicking other skin disorders. Unless a dh biopsy was done, it could be misdiagnosed as chronic idiopathic hives.

You will feel normal again. In fact, you'll be amazed because the celiac symptoms creep up on you so you don't realize just how great you can actually feel when they all go away. The hard part? Patience. You will have to have patience. You did not get sick overnight and you will not heal overnight.

Please visit our Newbie 101 pinned to the top of the Coping section. It will help you learn the diet as well as how to protect yourself from cross contamination. You will need to do some rearranging in your kitchen & get rid of some things & buy new.

Now to get your daughter an endoscopy........

BTW, all first degree relatives should be tested every 2 years in the absence of symptoms and immediately if symptoms present.

[cyclinglady]

Just want to add that I tested only positive on the DGP IgA.  The other celiac tests blood tests were negative.  My visual via endoscopy was normal, yet my biopsies revealed a Marsh Stage IIIB (moderate to severe damage).    Follow-up testing revealed that I continue to test positive to only the DGP IgA (now, that's the only test my GI will order to save money!).  So, it takes only one positive to warrant further investigation!  

[blueeyedapple]

11 hours ago, squirmingitch said:

You will feel normal again. In fact, you'll be amazed because the celiac symptoms creep up on you so you don't realize just how great you can actually feel when they all go away.

I have said this SO many times.  I didn't even report most of the symptoms to my doctor because I have had IBS for my whole life (or have I?) and stress has always been a trigger.  My husband has this crazy ex-wife and our life was very, very stressful so I just assumed that the diarrhea becoming more chronic was due to the stress and the hives could have been caused by stress too.  I just dismissed it all.  You don't feel great but you don't feel awful, and then not feeling great becomes the new normal and you feel worse but you just "don't feel great" again because the bar has been set lower, then that becomes normal.  The next think you know you feel like absolute crap every, single day and you don't even realize it until I said to my husband "I can't remember the last time I felt well". 

I am in Canada, so I don't know if the tests differ here.  All my doctor wrote on the requisition was "celiac testing" and those are the only results the lab returned, the TTG IgA and the Deamidated IgG.  My daughter is in Australia and hers was the same except they also did a total IgA.

After my results returned positive I went back to the doctor for my full physical.  She was surprised, she says she has never had anyone get the blood test and return a positive result.  She has many celiac patients but they were all diagnosed at a younger age.  I guess with gluten free being such a fad everyone wants the test.  I had a full blood work up for my physical with full thyroid and liver panels.  Everything returned normal except my vitamin D is very deficient and my C Reactive Protien is very high.  My iron is low but still within normal ranges.

Thank you both for your replies.  It eases my worry a bit.  I am so stressed that the biopsy will come back negative and then I am stuck still trying to figure out what is wrong and why I feel this bad.  Doc told me in advance he would take "4 or more samples".  After the test he said my intestines "don't look like someone with celiac disease" but that we have to wait for the pathology results because the damage can be microscopic.

I think that since my daughter has also tested positive, there is little chance that this can be anything else.  I am so sure that I have celiac that I have already replaced everything in my kitchen that needs to be replaced.  I am ready.

The best news is that because I am going through this, asked for the test and have been talking to people about it, at least two people I work with are also going to be tested.  I read that for every person diagnosed with celiac disease there are 6 people who are not diagnosed so I am working hard to find my 6 people! heh.

As I said, I have stopped eating gluten (after the tests were done).  I am on day 3.  I was very excited last night to tell my husband that my stomach didn't hurt after eating.  I do think that I feel better than I did last week but it is hard to tell when I am fighting a cold and it is raining so my head is pounding. 

Cyclinglady - stage 3B and nothing was visible?  Wow.

[blueeyedapple]

Oh and the hives, we are pretty sure they are hives.  They appear and then disappear within a 30 minute time frame.  They are particularly bad in warm areas (groin, arm pits, under my breasts) which is super fun when I am out in public .  They have been mostly kept at bay with prescription strength Reactin every day.

I read that idiopathic hives can be caused by an autoimmune disorder or many other things but that if they are worse around the time you menstruate that it is usually autoimmune - and they are, oh my goodness they are!  My GP says that although hives are not a typical celiac response it does happen and that they absolutely could be a result of the celiac.  She said "absolutely".  I was thrilled to hear that.  If all that gets better is hives I would be really happy!

Although . . . I do get this little blistery rash under my breasts sometimes.  But does DH come and go like that?  They don't usually last long enough for me to show the doctor - they would be gone by the time I got an appointment.

[squirmingitch]

2 hours ago, blueeyedapple said:

I have said this SO many times.  I didn't even report most of the symptoms to my doctor because I have had IBS for my whole life (or have I?) and stress has always been a trigger.  My husband has this crazy ex-wife and our life was very, very stressful so I just assumed that the diarrhea becoming more chronic was due to the stress and the hives could have been caused by stress too.  I just dismissed it all.  You don't feel great but you don't feel awful, and then not feeling great becomes the new normal and you feel worse but you just "don't feel great" again because the bar has been set lower, then that becomes normal.  The next think you know you feel like absolute crap every, single day and you don't even realize it until I said to my husband "I can't remember the last time I felt well". 

Exactly!!!! And BTW, one of the "triggers" for celiac to present itself is stress. The most common triggers are: stress, pregnancy, surgery, major illness, accident.

Yes, I mean, we aren't exactly taught in school what constitutes a "normal bowel movement right?" When docs asked me if I had "D", I would say no b/c I only had the (sorry TMI) watery stuff about once every 6 weeks but I did state that to them & even they blew that off. I never realized what I thought were normal bm's were actually not.

Ah, I see, you're in Canada. I believe it's standard practice there to do only the screening serum panel. No matter, b/c it caught you thank goodness. I'm glad to hear the doc told you the number of biopsies he'd be taking. Good deal!

Heh! Getting your six! GOOD FOR YOU! Way to go! It's true though. 85% of celiacs are undiagnosed and don't even know it. There doesn't always have to be GI issues. Over 50% of diagnosed celiacs did not present with GI issues. That's pretty eye opening right?!

I agree, with your daughter testing positive; I think it's a slam dunk.

There are many skin issues that are associated with celiac disease. DH is not the only one. Yes, dh can come & go at will (maddeningly with a mind all it's own) whether you're eating gluten or not until all the antibodies get out from under the skin. It also likes "pressure points". I have dh. I do not wear a bra anymore!!! Oh the horror! Same goes for panty lines. Owieeeee!!!!!!!!!!!!!!!!!!!!

Very, very cool that you are all ready!!! Kitchen squared away & everything. You did your homework! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyyy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and major kudos!

[blueeyedapple]

1 hour ago, squirmingitch said:

Exactly!!!! And BTW, one of the "triggers" for celiac to present itself is stress. The most common triggers are: stress, pregnancy, surgery, major illness, accident.

Yes, I mean, we aren't exactly taught in school what constitutes a "normal bowel movement right?" When docs asked me if I had "D", I would say no b/c I only had the (sorry TMI) watery stuff about once every 6 weeks but I did state that to them & even they blew that off. I never realized what I thought were normal bm's were actually not.

I went to nursing school (not working as a nurse) so I can't use that excuse.  I knew it wasn't normal but I always assumed it was stress and IBS.  But there is a difference, my IBS is extremely painful for a very short period of time - I would sit in the bathroom and cry and scream, have cold sweats and then it was gone.  When the diarrhea started becoming chronic there was no pain but I was relieved at that.  But I really don't think I should need baby wipes and a half a roll of toilet paper every time I go.  TMI right? LOL

As for the stress bringing the celiac on, I know and believe me I am blaming her.  I won't go into great detail because this isn't the place but it was day after day of stress, and if she wasn't email something nasty or having the police or children's services show up at my house then I was waiting for her to do something and wondering why things were so quiet.  (She left him for another man before I even met him)  It was awful and I am surprised our marriage has lasted but obviously my intestines have taken the brunt of the stress.  That is also why I brushed off the hives, that level of chronic stress can cause havoc on your system.  I kept thinking that one day the stress would be gone and all these things would magically disappear.

Come on doctor . . . call me.

[cyclinglady]

This might explain your rashes and IBS symptoms:

Open Original Shared Link

Open Original Shared Link

Jebby is a forum member of celiac.com.  She is a premie doctor who has celiac disease.  I like reading her blog.  Anyway, Mast Cell Activation Syndrome is real.  Could be the source of your rashes.  There is not a cure for MCAS, but antihistamines can help.  It can also improve as you heal from celiac disease.

Just food for thought.  

Oh, yes.  I was normal visual on the endoscopy (I keep all medical records).  Villi damage is be microscopic -- hence your having to wait for the pathologist's report.  But if negative....don't forget that the small intestine when stretched out is larger than a tennis court.  Easy to miss patchy areas of damage.  My niece's Crohn's was missed because it was at the very end of the small intestine.  Only a pill camera caught her damage (I had rather wished she had celiac disease instead.....)

 

[blueeyedapple]

No.  Just no.

I am not giving up bread, beer and all the wonderful glutenous foods AND pickles, avocados, cheese, tomatoes and all the other wonderful things on that list.  That would just be unfair.

However, of the list in the second link I do have the GI symptoms, fatigue, hives, brain fog, anxiety and the sensitivity to sunlight (I have polymorphic light eruption - the sun gives me a rash).

I am going back to no.  Let's just wait and see what the gluten free diet does before I give up pickles.  You can take away my pizza, but not my pickles.

[squirmingitch]

If you bake there are a duo of fabulous cookbooks you simply must have. I swear, the breads, pastries, rolls, coffee cake, you make from those recipes are sheer heaven. Seriously, gluten eaters will never figure out they are gluten free.

Open Original Shared Link

Open Original Shared Link

[blueeyedapple]

Thank you. I will have to get these. I am an avid baker and hobby cake decorator. I bake about 2500 cookies every christmas as gifts. It is too late to change things up for this year, baking season starts saturday so I will have to suffer through and clean everything before I eat anything. My husband will sadly have the burden of taste testing every batch. But for next year I hope to have some different recipes or at least a better plan.

Most of my food coloring has to go, it is all made in a factory that processes wheat, although i guess they can be used on other people's cakes

[squirmingitch]

Are you saying you're going to bake up all those gluten cookies starting Saturday? If you are saying that then I must tell you it's a very bad idea. For a celiac that's a no-no. Celiacs can't make cakes, cookies or anything with gluten flours because they breathe the flour. What goes down your throat ends up in your stomach. No gluten baking should be done in your house - ever. It's fine to buy gluten bread & pasta & bring it home for the gluten eaters but not okay to have gluten flour poofing around your home.

[Ennis-TX]

1 hour ago, blueeyedapple said:

Thank you. I will have to get these. I am an avid baker and hobby cake decorator. I bake about 2500 cookies every christmas as gifts. It is too late to change things up for this year, baking season starts saturday so I will have to suffer through and clean everything before I eat anything. My husband will sadly have the burden of taste testing every batch. But for next year I hope to have some different recipes or at least a better plan.

Most of my food coloring has to go, it is all made in a factory that processes wheat, although i guess they can be used on other people's cakes

LorAnn Oils has Gluten Free colors, extracts, emulsions. etc. Really is a go to for gluten free baking. Gerbs allergen friendly foods for chocolate chips, and dried fruits in baking. And you will find the flours, and flour blend from Authentic Foods to be a life saver for a bakery, I like blending my own flours, I normally use a almond/coconut, or a Almond/Oat (oat from gluten-free Harvest) or a Garfava blend for savory breads with herbs and caraway seeds for even a rye like substitute. I find sorghum makes a great banana bread and millet goes great in cookies and quick breads adding a very interesting flavor while being a tad drier crispy in cookies. I personally find using Almond Butter and coconut flour or almond butter and oatmeal/oat flour makes some of the best cookies. Though you have to make them in muffin tins to keep them from going to thin. Good luck on modifying your recipes.

[blueeyedapple]

2 hours ago, squirmingitch said:

Are you saying you're going to bake up all those gluten cookies starting Saturday?

Sadly, yes, this is what I am saying.  I have two cake orders that I have to do and all the cookies for Christmas.  It is too late for me to back out of the cakes and it is too late for me to come up with an alternate plan for Christmas.

It is 4 weekends and since I have been suffering for 9 years (or more) I don't think a month will make a huge amount of difference.  I will wear a mask, wash everything down once the flour has settled and do the best I can.  By Christmas, my home will be purged of wheat flour, I am taking no more cake orders and I will have a year to come up with an alternate plan for Christmas - or maybe it is just time I hang up the oven mitts.

1 hour ago, Ennis_TX said:

LorAnn Oils has Gluten Free colors, extracts, emulsions. etc. Really is a go to for gluten free baking

Americolor is my favourite colour brand, and they are gluten free, nut free, peanut free and kosher.  Most of my colours are Wilton because I used to teach cake decorating classes as a Wilton Method Instructor - I guess it is a good thing I don't do that anymore.

[cyclinglady]

You don't have to give up on baking!   I easily converted all my traditional Christmas cookies to gluten-free.  Even Kolacky's (yeast-based) turned out great!  My Polish relatives would be proud!   gluten-free cookies do require freezing to preserve freshness and parchment paper is necessary.   My freezer is filled with brownies, chocolate chip cookies, snickerdoodles and I just made a pumpkin cheese cake (like the Libby's pumpkin cream cheese roll) but in a 10 x 13 pan. Next week, it's pumpkin and apples pies.    Yummy!  But my baked goods just lack gluten.  I use lots of butter, eggs, cream, nuts, etc.  That's often the downfall of many gluten-free bakeries.  They try to please everyone who has allergies!  

 

[blueeyedapple]

The scope results came back normal.  I am so frustrated that I want to cry.

It has only been 4 days gluten free but the bloating is gone and the pain after I eat is gone.  My daughter's blood test came back positive, my blood test came back positive.  How can the scope be normal?

I have a follow up appointment with him in a month.

[cyclinglady]

It's easy to miss patchy areas of the small intestine.  If spread out, the small intestine is larger than the size of a tennis court.  But you have a few options.  You could ask for a genetic test and the rest of the celiac panel.  This might help the GI to give you an official diagnosis, along with trialing the gluten-free for six months.   (There is a reason why your had a very elevated TTG.  If it's not celiac disease what is it?  Should it be repeated after Christmas and you bake all those cookies?)  If symptoms resolve, you will at least know if gluten does make you sick (sounds like you have tested this out in just a few days).  You might have Non-celiac Gluten Intolerance.  Celiac researchers think that some 9 to 10% of the population has this issue.  It's real.  It's a reason why the gluten-free diet continues to grow.  Gluten makes many people sick! Finally, you can just go gluten free yourself.  That's what my hubby did.  Some 15 years ago, his GP and my allergist recommended that he go gluten free.  The first year was hard (lots of mistakes and cheating), but we realized that gluten makes him sick.  He has been gluten-free for 15 years.  The proof is in how he feels!  Why else stick to this very restrictive diet?  Then at year 12, I was diagnosed formally with celiac disease.  Who would have guessed?  What were the odds?

The bottom line is that you are going to have to decide what's best for you.  Personally, the elevated TTG means something is off.  I am not a betting person, but I would think it's still celiac disease.  It could be another autoimmune disorder.   I would want the DGP IgA and EMA IgA tests.  The genetic test will just help rule out celiac disease as some 30 to 40% of the population has these genes.  The rest of the celiac disease panel is around $200 (US).  It would be worth it to pay for it out of pocket.  Seriously.  And....how many tissue samples and what locations?  Did the GI follow the recommendations of the Canadian GI Association?  

Only you can be your best health advocate.  Do not give up! 

[blueeyedapple]

He said he was going to take 4 or more samples.  I have no other information than what his secretary told me today, that it is normal.

I am going to continue with the gluten-free diet until I see him (December 19).  Maybe just before that I will eat some gluten so I can go to him and be able to say it clearly is causing me issues.

I am just so frustrated now.  I definitely don't want to be on a gluten-free diet because it is a fad and when I asked for the test I absolutely expected it to come back negative so when it came back with a positive result it set my world in a bit of a spin.

However, if I feel better on a gluten-free diet I am not above just telling the world I have celiac disease and staying gluten-free.  I know that non-celiac gluten intolerance is real but I feel that people have no respect for it, where if you say celiac they tend to have (a little) more respect.

I just wanted this to be over, I just wanted an answer.  Celiac definitely wasn't the answer I was hoping for but it IS an answer.

[cyclinglady]

I know that my hubby will be the first to tell you that I have had WAY more support from family, friends and medical (no eye-rolling ).  But...the bottom line he is healthy and well on a gluten free diet.  Kind of critical when you are self-employed.   You have to be on the top of your game!  So, a gluten free diet may be the answer for you.  

I know you are in Canada, but don't you have the right to copies of your medical records?  What did the pathologist say?  Mistakes are made......as a nurse, you know that.  

 

[ravenwoodglass]

IMHO positive blood work trumps negative biopsy. Damage can be patchy and be missed and some doctors don't recognize changes that are seen before full villi destruction. Personally I wouldn't eat gluten before your followup. Instead make a note of any and all improvements gluten free and then in 6 months or so do the blood test again and see if those positive bloods have gone back to normal levels or at least decreased substantially.

[blueeyedapple]

4 minutes ago, cyclinglady said:

I know you are in Canada, but don't you have the right to copies of your medical records?  What did the pathologist say?  Mistakes are made......as a nurse, you know that.  

I can absolutely ask for a copy or at the very least to see the results.  I haven't seen him yet though, I will ask for that when I see him in December.  I just spoke to his secretary this morning.

[blueeyedapple]

5 minutes ago, ravenwoodglass said:

IMHO positive blood work trumps negative biopsy. Damage can be patchy and be missed and some doctors don't recognize changes that are seen before full villi destruction. Personally I wouldn't eat gluten before your followup. Instead make a note of any and all improvements gluten free and then in 6 months or so do the blood test again and see if those positive bloods have gone back to normal levels or at least decreased substantially.

I feel that the blood test should be enough too.  I understand that other things besides celiac can cause the TTG IgA to return a positive result but my daughter's results are also positive so it doesn't make sense that it is anything else.

[squirmingitch]

Like cyclinglady said & I ditto; you need to ask for the rest of the full panel BUT you would have to go right back on gluten now so you wouldn't get a false negative. Cyclinglady only tests positive on the DGP IgA which is really weird (we always knew she was weird ) which usually only 2 yr. olds test positive to. Oh! That's it! She's in truth just a 2 yr. old masquerading as a grown up. 

OK, back to being serious. Sigh. I don't want to be serious today.

How many of the tests were given to your daughter and which ones was she positive on?

I also think the genetic test would be a good idea.

I also agree that with your daughters result, it's a 99% reinforcement that yours is celiac. And since i'm being so agreeable today, I also agree with both ladies as to damage being patchy. They can just plain miss the sweet spots. Finally, yes, DO get the pathology report & have a look at it. It may not happen often but mistakes are made & someone's pathology report gets mixed up with someone else's. 

[blueeyedapple]

My daughter had the test in Australia.  They seem to only do the screening tests too.  Her total IgA is within normal range, her TTG IgA was 68 and the reference range for the test was normal if less than 15 and her deamidated IgG was 11 with the normal being under 7, there was some note that they used the ELISA testing for this.

From what I have read, genetic testing is "not readily available" in Canada.  I live in a big city so it shouldn't be hard to find but I am not sure I want to sink more money into this. 

If GI doc can't give me a good reason why daughter's results are positive and my results are positive, but scope is negative then I am just going to assume it was missed and go about my life pining for pizza and beer.

[cyclinglady]

1 hour ago, blueeyedapple said:

My daughter had the test in Australia.  They seem to only do the screening tests too.  Her total IgA is within normal range, her TTG IgA was 68 and the reference range for the test was normal if less than 15 and her deamidated IgG was 11 with the normal being under 7, there was some note that they used the ELISA testing for this.

From what I have read, genetic testing is "not readily available" in Canada.  I live in a big city so it shouldn't be hard to find but I am not sure I want to sink more money into this. 

If GI doc can't give me a good reason why daughter's results are positive and my results are positive, but scope is negative then I am just going to assume it was missed and go about my life pining for pizza and beer.

Encourage her to get scoped.  She's got two positives.  A very formal diagnosis may help others in the family!