Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

[rcheltrvel]

Thanks. I will try eating it only at night, I am going to try tonight. But I have this horrible neck issue that is worst upon waking and I am starting to suspect that my old late night gluten/carb snacks could be making me much worse in the morning, I will try it once and if it's not good, I will try for lunch only. This way I can maybe get some work done in the morning and maybe it will tapper off by night. But who are we kidding, it will probably not matter that much. I will have a half for you tomorrow Lisa, today I am taking my 5 year old out for pasta. Thanks for the advise about keeping the processed non-gluten foods to a min. I think when I went off for the first five days, I was eating so many non-gluten carbs that my stomach wasn't so happy. I will try to stick to whole foods as much as possible. Last night all I wanted was a huge hamburger. Red meat, that is all I wanted and I feel like that again today. My doctor is testing me now for low iron, I wonder if that could be why I am having this huge craving. Did you ever have low iron?

[1desperateladysaved]

I feel like I should yell surprise!  I felt many of the same feelings in my diagnosis.  I enjoyed baking and thought that bread was the ultimate healthy food.  Now I loath it.  I am hoping your challenge will be over soon and you will have a definitive result.

 

D

[GottaSki]

Thanks. I will try eating it only at night, I am going to try tonight. But I have this horrible neck issue that is worst upon waking and I am starting to suspect that my old late night gluten/carb snacks could be making me much worse in the morning, I will try it once and if it's not good, I will try for lunch only. This way I can maybe get some work done in the morning and maybe it will tapper off by night. But who are we kidding, it will probably not matter that much. I will have a half for you tomorrow Lisa, today I am taking my 5 year old out for pasta. Thanks for the advise about keeping the processed non-gluten foods to a min. I think when I went off for the first five days, I was eating so many non-gluten carbs that my stomach wasn't so happy. I will try to stick to whole foods as much as possible. Last night all I wanted was a huge hamburger. Red meat, that is all I wanted and I feel like that again today. My doctor is testing me now for low iron, I wonder if that could be why I am having this huge craving. Did you ever have low iron?

 

Yes...I was anemic most of my adult life.  At diagnosis...I was low in all Bs, D, K, Iron and more...took some time but they steadily improved after removing gluten...and were in the upper third of normal at 18 months gluten-free

[rcheltrvel]

Well, tomorrow I get my endoscope. Finally. I can't believe I'm saying this but I pray I am Celiac and can finally put closure to my search for answers. Yes, I feel like dying today, but I got to binge on Girl Scout cookies today! For my last time ever, no matter the outcome. I did discover on this gluten challenge that when I eat gluten at night, I wake in the middle of the night and in the morning with severe neck stiffness ands in and swollen, black eyes. I can't eat gluten in the morning because then I can't work. So I do it mid afternoon and just suffer but at least it's not as bad. Today I received some new blood tests back from my Gastro, I may have some low iron going on from what I can tell but you tell me...

Total Iron = 119

Iron TIBC = 495

Transferren Saturation = 24

Ferritan = 13 (range is 12-300)

Not sure of the other ranges as I don't have the tests in front of me.

[GottaSki]

Good Luck tomorrow!

 

I hope you have a nice little nap

 

Let us know how it goes

[rcheltrvel]

Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused!

Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!

[GottaSki]

Made it through my endoscopy today, it was a nice sleep! I was relieved yet crying when I woke up. I have been having so much upper stomach pain since this two weeks of torture started, I thought I could have an ulcer. No ulcer but I do have an inflamed stomach (Gastritis) with a lot of bleeding. The Gastro said its from the anti-inflamitories I have been taking for the last few years. While I believe anti-inflams can cause this issue and knew long term use could do this, I think it's so weird that the intense upper stomach pain started the minute I cut out gluten and started adding it back. Coincidence? My regular Dr. today said I just recently started bleeding. So confused!

Anyway, have to wait 10 more days for my Celiac results. Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

At least I can breath and I had my first gluten free day in two weeks and am so happy, even know I am still nursing my gluten hang over from yesterday!

 

Hi Rachel!

 

Glad to hear you had a nice nap.

 

Yes, I have input.  Surprise, surprise. 

 

While gastritis and inflammation in the stomach can be caused by anti-inflammatory usage -- this is the first assumption most GIs make for the cause of inflammation in the digestive tract.  I can only tell you my experience and that is the inflammation in my stomach did not appear until I had stopped all usage of ibuprofen for pain for a period of at least two years and yes...that made my celiac/gastro doc scratch his head a bit

 

It is tough waiting for results from the biopsies -- but you are way ahead of the game because you already know that you cannot tolerate gluten regardless of the results.

 

Rest up, and let us know if you have any questions as you remove gluten from your life  

[NoGlutenCooties]

 Dr. Said he didn't see anything that looked Celiac but said that doesn't mean it's not. Any imput on this?

 

I was lucky in that when I had my biopsy my small intestine was visibly inflamed (I have the pictures) and the doc told me she could tell that I have Celiac without even having to wait for the results to come back.  However, the inflammation can come and go and even when it's there it can be spotty and easily missed.  So I'm not surprised that in your case it wasn't inflamed to the point of being readily visible - seems to happen alot.  I don't know if that decreases the chances of the biopsy coming back negative... but I wouldn't necessarily think so.  To my knowledge, the actual villi damage can also be spotty - so they could still miss it - but it wouldn't completely go away.  I don't think.

[IrishHeart]

Hi Rachel! 

 

The GI tract can be damaged and have inflammation for any number of reasons, such as gastritis or acid reflux or several other

GI conditions. NO GI doctor can diagnose celiac by "just looking" at the intestine.

I have asked my own GI doctor about this and he was emphatic about that. (that's how I was left UnDXed by the guy I went to for 12 years.) 

 

At the time of biopsy, the duodenum appears normal in many people with celiac disease. Some people do

have inflammation, but a doctor who says "It's celiac" based on a visual of inflammation-- is just taking a guess. 

 

Open Original Shared Link

[NoGlutenCooties]

but a doctor who says "It's celiac" based on a visual of inflammation-- is just taking a guess. 

 

Correct.  Just to clarify... this was based on positive blood work and family history PLUS the obvious inflammation.  They did still send the biopsies to confirm and to rule out other causes.  My point was just that sometimes there is visible inflammation and sometimes there isn't.

[rcheltrvel]

Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!).

 

 

Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way.

 

 

Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[IrishHeart]

 

Actually, my GI doctor did not confirm Celiacs at all. My regular doctor did based on my 20 year history of symptoms, some deficiencies, raised liver and cholesterol. etc.. plus a positive Celiac blood test. The GI doctor did the endoscopy and said I have a large amount of inflammation and bleeding and he said it could be worsened by possible Celiacs but he said it is from my long term use of anti-inflamitories (for my neck). He said he didn't see anything that could confirm Celiacs but he took at least 6 samples (as I was advised to make sure he did so and I did) and I get my results late next week. He said you really can't tell by the eye. I do not have any ulcer. Just bleeding stomach (lovely!).

 

 

Anyway, doctor gave me small dose of pain relief for my neck (Neurontin) and I started taking vitamin D in a large, prescription dose and also Prilosec. Today is day 2 of Gluten free and I have NO neck pain for almost the first time in my adult life and my stomach pain is completely gone. Like a miracle. I won't say I am cured, but I am surely happy and on my way.

 

 

Today is actully my 42nd birthday and also the first day of my new life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

 

 

Happy Birthday!!  and you may discover you do not need that pain medicine at all. Be careful taking it and be sure to taper off it when you want to stop. Docs love giving out that neurontin.  Soon, you will probably not need that Prilosec either. (been there/done that--and same thing: horrid neck pain, joint pain, "fibro")  MANY of us have walked this same path. It gets better and better off gluten.

 

My point is whether the biopsy is positive or not, whether they "see anything or not"....you've got a pos. blood test and relief of symptoms off gluten. Sounds like celiac  to me.

 

Hang in there! Enjoy the feeling of "wellness". Cheers, IH

[GottaSki]

Happy Birthday Rachel!!!

 

Glad you are now able to dump the gluten.  Let us know if you have questions.  I think I mighta already given you the newbie thread started by Irish, but just in case here is the link:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Hang in there and have a wonderful birthday

[rcheltrvel]

Hi,

Well 10 days later, I got my Upper Endoscopy report, so confused at this point and disappointed. GI said my Villi look fine, I do have Gastritis with bleeding, as I mentioned. He said probably from years of anti inflams. He said because I have the positive iGG-iGA test, symptoms and a negative biopsy, he now wants me to take the genetic blood test (HLA-DQ2 & DQ8). He said my neck, cognitive, chills, migraines, fatigue, exercise issues, weird allergies and everything else is probably not from any of this. More confused. On top of everything else, he wants me to come back for another procedure, a Colonoscopy, because one doctor I didn't like said I had a trace of blood and he wants to make sure it's nothing more then my stomach bleeding and hemroids. Great! When I got out of the Endoscope, he told me I didn't have to get the Colon procedure because the blood was coming from my stomach but now he changed his tune. I really hope he is doing this to make sure I don't have cancer or something and not just to take my money for another producers. He is a very reputable GI.

Anyway, here are my test results...I asked him to make sure he takes at least 6-8 samples and he said he would. It's hard for me to know from this report how much he actually took and he really didn't sit down with me and show me the report. He just told me, then I asked for the report on my way out.

1) Duodenal Biopsy (Part 2) - no significant histologic abnormality. No evidence of villainous blunting or abnormal inflammatory infiltrate.

2) Duodenal Biopsy (Bulb) - predominatly gastric body mucosa with patchy mild nonspecific chronic inflammation; consistent with ectopic gastric rest.

3) Stomach Biopsy (Antrum). - minimal nonspecific chronic inflammation. A diff-quick strain is negative for helicobacter organisms.

4) Stomach Biopsy (Body) - no significant histologic abnormality. A diff-quick strain is negative for helicobacter organisms.

There were four parts of my stomach tested I'm assuming. 1 & 2 say they took "multiple" pieces of soft tissue ranging from .1 to .3 cm. 3 & 4 said they took one from each. Four cassettes of specimens all together.

What does this all mean?

Thanks, Rachel

[nvsmom]

'm afraid I can't comment on the endoscopy report. I never had it done myself, so I have not bothered learning much about it. Pages 8-9 of this report go into some detail as to what is normally seen in the biopsy. Open Original Shared Link

 

Keep in mind that some celiacs do pass the biopsy - it really isn't that unusual. You have a positive test (tTG IgA I believe) and a positive response to the gluten-free diet as well as a negative response to a gluten challenge... it's probably celiac disease. Did they do the other celiac tests for you? The DGP IgG and tTG IgG? Some people are more positive in those tests than the IgA based ones.

 

Personally, I wouldn't put much stock in the genetic tests. A positive result means you are in the population which is more likely to develop celiac disease but it doesn't tell you if you have it, and a negative result means you are one of those people less likely to get celiac disease but you can still get it... doesn't tell you much. KWIM?

 

If there is no more testing (IgG based tests) then I wish you luck with the gluten-free diet. You either have NCGI or celiac disease but either way the treatment is the same.    I hope you feel well soon.

[GottaSki]

I agree with Nicole

 

It is extremely frustrating, but the endoscopic biopsy is not perfect and only two samples from the small intestine is not optimum.  It is done now, so remain gluten free to monitor symptoms.  Repeat your antibody tests at six months -- if they have come down with the removal of gluten it is celiac and not ncgs.

 

Gene testing is fine to have done, but is not definitive.  On the plus side - if you are DQ2 or DQ8 your doctor will likely agree to call this Celiac Disease.

 

Hang in there

[rcheltrvel]

Hi Lisa,

 

How do you know from what I wrote that there were only two samples taken from my small intestines? When I was going in for the procedure, right before I went under, I asked the GI if he could please make sure he takes 6-8 samples. He says, don't worry, I take plenty. When I first read the report today, I also thought he only took 2. But then my mom (who also read the report) pointed out that under each of the 2 containers, it says "multiple". So could that mean he took more then 2 samples?

 

My uncle is a big pathologist in NYC, I have a call into him to help me understand what he actually took, not sure if it will help.

 

So if I stay gluten free for 6 months and my level comes down, that would prove Celiacs?

 

Thanks, Rachel

[GottaSki]

hmmm, I read it to be #1 and #2 were single samples

 

Was the report generated by the pathology lab or your doctor's office?  I would definitely have your uncle look at it -- every lab words things differently and it's hard without seeing the report to help more.

 

I think positive celiac antibodies with symptom resolution after removing gluten is enough to diagnose Celiac Disease and your antibody levels falling would add weight to the diagnosis, but what I think doesn't really matter -- you'll have to decide if you have enough pieces of the puzzle and weather or not you need an official diagnosis.  If so, the gene test may help with this.

[anand]

Hi,

U may want to discuss to option of capsule endoscopy... Will scan the entire small and large intestine... And much easier than a colonoscopy...

Open Original Shared Link

Best wishes

[Celiacandme]

Just read this thread and it sounds like you've been through so much. I don't want to comment to much on your report findings because I consider myself to be still learning about all this but like the others mentioned above it seems like you are gluten intolerant regardless of the outcome. I'd be curious to see how your numbers look after 3-6 months completely gluten free. Now that you can fully follow a gluten-free menu, I hope you start feeling better soon. And I'm sure you've done it already but don't forget to make sure any medications/supplements you take are gluten free! Best wishes!

~Julie

[rcheltrvel]

Well, all my tests are in. Positive TTg-IGA, negative biopsy, negative genetic markers. After being gluten free for over 3 weeks now, some of my neck inflammation and pain has subsided, although pain still there, migraines are under control, a little less tire (only a little), a little more energy (not that much) and can think a little clearer (but not that much).

So far I have been glutened two times. Once from an accidental bite of a rice cake with wheat, and once from wine tasting at a few different vineyards. Turns out I'm super sensitive to even one bite and even alcohol. I can't drink Vodka anymore and many wines bother me but not all. I believe the reaction from the wine is dependent on if they use wheat in the glue to seal the barrel. I keep trying different wines and one night I had three glasses of one white wine and was fine. I am keeping a symptom journal and there does seem to be a pattern.

30 mins after ingestion of the gluten, atomic gas, I can clear a room. And I rarely have noticeable gas. Then extreme fatigue followed by serious rage, neck pain (once a mirgaine started after the wineries but I took mirgaine med and was OK). The next day and that night, I go to the bathroom (normally I'm constipated but one bite of gluten seems to get my system going I guess). Day one the bathroom stuff is normal. Day two it's soft and then finally diareah. When I wake in the morning my eyes circles are blacker then ever and I get a lovely hire under my right eye.

I was truly shocked that I didn't have Celiacs and still have no answers as to why my antibodies were raised, cholesterol raised, low vitamin D, liver enzymes raised, iron ttcb raised, etc.... Obviously I have NCGS and I also have Fibromyalgia but can all of these issues really be from NSGS only? And what about my chronic chills, exercise intolerance and raised antibodies?

[notme]

(wheat paste to seal wine barrels = myth)  (just sayin')

 

that is a bummer your tests are inconclusive - there is one thing this diet is good for is:  paying attention to what you're putting into your body    you *will* feel better if you eat better. 

 

edited to add:  if you don't have the genetic markers, you don't have celiac.  are you keeping a food journal?  certain other foods also have a 'lovely' effect when your system is out of whack.  good luck! 

[nvsmom]

Well, all my tests are in. Positive TTg-IGA, negative biopsy, negative genetic markers. After being gluten free for over 3 weeks now, some of my neck inflammation and pain has subsided, although pain still there, migraines are under control, a little less tire (only a little), a little more energy (not that much) and can think a little clearer (but not that much)......

.....I was truly shocked that I didn't have Celiacs and still have no answers as to why my antibodies were raised, cholesterol raised, low vitamin D, liver enzymes raised, iron ttcb raised, etc.... Obviously I have NCGS and I also have Fibromyalgia but can all of these issues really be from NSGS only? And what about my chronic chills, exercise intolerance and raised antibodies?

 

 

I don't know.... When I see a positive tTG IgA with symptoms of gluten sensitivity, I assume that it is celiac disease. The specificity of the tTG IgA is 91-95% according toOpen Original Shared Link, with an average specificity of about 95%. That means that 5% of the time the positive tTG IgA is caused by crohn's, colitis, chronic liver disease, diabetes, thyroiditis, or an infection.  

 

Not having the genetic markers for celiac disease just means that you are less likely to get celiac disease than the population who has the DQ2 and DQ8 genes. There are a few board members who have celiac disease (diagnosed) but were negative for the genetic tests. Those genetic tests don't show a lot except likelyhoods of getting celiac disease, that's it.

 

I'm guessing the wine sensitivity has nothing to do with celiac disease unless your damaged git can't handle it for whatever reason. I get a "glutening like" stomach pain if I each raw apples or pears. I know it's not gluten, just something that doesn't agree with me, or some other sensitivity. KWIM? Vodka would be the same thing... it's basically water and ethanol derived from potatoes.  I can't drink vodka either, but that's from a really unfortunate night in university when I drink a mickey  of vodka neat. Ugh.  I'm the only one in my Ukrainian family who shuns vodka.  LOL

 

I would guess, with a positive tTG IgA, that your tests were abnormal due to celiac disease. All of those tests can be abnormal from NCGS but NCGS does not cause an elevated tTG IgA.

 

Good luck with the gluten-free diet. Give it a few months before you judge it's effectiveness, it can take a lot of time before one feels consistently better.

[IrishHeart]

Actually, Dr. Fasano addressed the genetic component at the gluten-free Conference Saturday in Orlando and he talked about this rather factually.

 

He said the HLA-DQ2 and HLA-DQ8 genes are the only genes associated with celiac.  They are necessary for it, but not determinate.

 

In other words, you may have the genes and never trigger it. But if you do not have DQ2 or DQ8, celiac is excluded.

 

I know there are reports of cases where people have a celiac diagnosis, and do not carry either of these genes, and  I cannot account for the abnormality. I am merely reporting what he said.  He said they  have researched it and this is still the conclusion.

 

Nobody yell at me now. I am just the messenger. 

[kareng]

 I believe the reaction from the wine is dependent on if they use wheat in the glue to seal the barrel. 

 

 

 

We have had several threads about this.  There has been no evidence that there is gluten in wine.  No wine maker would let flour or any type of glue get into the wine.  Also, many types & less expensive wines aren't even put into wooden barrels.