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Biopsy Needed?

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fun-size Newbie
fun-size
Posted

I've had health problems my entire life and for the last 2 months I've had stomach symptoms. A friend of mine has celiac and told me to get tested to rule it out. My IGA came back Friday negative and the nurse told me I was fine. Yesterday my TTG came back at a 76 so they said I was very positive. Tomorrow I have a meeting with a specialist. Is my blood test enough to show I'm positive or will I need other blood tests and a biopsy?

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lizard00 Enthusiast
lizard00
Posted

Hello and welcome!!

Your doctor will probably want to do a biopsy, as the combination of positive bloods and biopsy is the current diagnostic "gold standard". You should talk to him/her further at your appt about whether or not you want to have it done. As I understand, the biopsy is a painless procedure.

I wish you the best at your appt. :)

fun-size Newbie
fun-size
Posted
  • Author
Hello and welcome!!

Your doctor will probably want to do a biopsy, as the combination of positive bloods and biopsy is the current diagnostic "gold standard". You should talk to him/her further at your appt about whether or not you want to have it done. As I understand, the biopsy is a painless procedure.

I wish you the best at your appt. :)

Could the biopsy come back and show that I don't actually have Celiacs or is my blood test result pretty positive?

lizard00 Enthusiast
lizard00
Posted

That is possible. Remember that your small intestine is something like 22 ft long, and celiac is a patchy disease. So, it is possible that the area that they biopsy is not yet affected by the disease. Most doctors will take a few biopsies from different locations, but that is something you need to discuss with him.

You blood result is positive. The blood tests for Celiac don't give false positives, only false negatives. And the TTG test is highly specific to Celiac disease. It has to do with the immuno rxn in your intestines.

fun-size Newbie
fun-size
Posted
  • Author

Thanks. My next question is how gluten free are celiac sufferers suppose to be? Can I eat it once in a while or in small doses? Are there different levels at different degrees? OR, do I need to give it up altogether down to the last crumb forever?

aikiducky Apprentice
aikiducky
Posted

I'm afraid you need to give it up 100% for the rest of your life. :( But after a while, when you've figured out what you still can eat, and you start to feel so much better - it really isn't the end of the world. :)

Don't go gluten free yet if you're going to have a biopsy, it can affect the results as your intestine starts to heal.

Pauliina

ThatlldoGyp Rookie
ThatlldoGyp
Posted

I would do both. It is the "gold standard" of diagnosis for now. And besides, I find it good to know my staging so I can judge my recovery not just on symptoms and bloodwork alone.

And, yes, 100% for the rest of your life. I just read a study where duod. biopsies (I meant) were done on Catholic celiacs where their only known exposure was the communion wafer once a week, and that was enough to stimulate the autoimmune response resulting in damage to their intestine. ( I hope this study will get Rome to FINALLY change their policy on wafers only being made one way and that way only, or at least get the gfs out there for gluten intolerant people for free!) ( I read this study 2 weeks ago and it is in Romanian, so please pardon me if I made any mistakes!)

Once you get the hang of it and learn how to eat, added in with how much better you feel, you really won't want those gluteny things anyway. Well, you will want them, but you understand the consequences, so the temptation is less anyway...There are plenty of gluten-free products now that you can use to make your fav. meals and dishes so once you get the hang of it, it isn't really much of a sacrifice. Convenience of the usual american diet (if that is where you are) is out the window though, and you have to watch out for everyone else trying to gluten you (by accident, let's hope) though, lol! (restaurants, cosmetics, personal care products, cross contam. during manufacturing, medication,etc.)

Get the biopsy asap, and go ahead and start going gluten-free. No one gets it 100% right away anyhow, so you will probably be exposed and it takes up to a year for the adult gut to heal anyway. My best advice? Clean out your cupboards of all gluten products, buy the new gluten-free shopping guide (available on this site), get gluten-free for dummies and the gluten-free girl books, read everything you can on this site and get started asap! The sooner you get the hang of it, the sooner you can start to heal and recover. Congrats on your diagnosis, some of us wait 40+ years for the answer to our symptoms(it personally took 20 yrs for me to be diagnosed)! ugh!

Sorry for all the edits, I was in a huge rush last night, but really wanted to write you back. Good luck and I know all the docs say not to stop eating gluten, but if your gut hurts, why continue to suffer?

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gfp Enthusiast
gfp
Posted
That is possible. Remember that your small intestine is something like 22 ft long, and celiac is a patchy disease. So, it is possible that the area that they biopsy is not yet affected by the disease. Most doctors will take a few biopsies from different locations, but that is something you need to discuss with him.

You blood result is positive. The blood tests for Celiac don't give false positives, only false negatives. And the TTG test is highly specific to Celiac disease. It has to do with the immuno rxn in your intestines.

I would also discuss what the Dr. will interpret a negative biopsy as.

If at the moment they are happy then you get a false negative biopsy how will this affect their view?

Sometimes less can be more ...

On the other hand if they view the biopsy as a way to view the extent of the damage (not diagnose celiac) it can also show the amount of damage and whilst they are in there they can check for other things.

The danger is the biopsy comes back negative and you then end up in no-mans-land of celiac or not ...

One thing is for sure, if you are going to get it get it ASAP. Once you go gluten-free you will not want to poision yourself deliberately for several weeks just to get a 'gold standard'

Thanks. My next question is how gluten free are celiac sufferers suppose to be? Can I eat it once in a while or in small doses? Are there different levels at different degrees? OR, do I need to give it up altogether down to the last crumb forever?

You are going to get a bit confused, don't worry .. we all did

First yes 100% .. the problem so far is you have no idea what that means .. (really)

Unfortunately neither do most doctors or even GI specialists.... its one of those things that seems simple and when you look in depth seems really complex...

HOWEVER... its actually complex but still easy... like driving a car or riding a bike... it seems impossible at first but soon it becomes second nature... inbetween you will probably have times when you think "I'll never get this" or "its not worth this hassle and stress" .. trust us, it is and once you get it off it is actually really easy.

home-based-mom Contributor
home-based-mom
Posted
Yes, 100% for the rest of your life. I just read a study where endoscopies were done on Catholic celiacs where their only known exposure was the communion wafer once a week, and that was enough to stimulate the autoimmune response resulting in damage to their intestine. ( I hope this study will get Rome to FINALLY change their policy on wafers only being made one way and that way only!)

Would you mind sharing where you found that study?

fun-size Newbie
fun-size
Posted
  • Author

Well I went to the specialist today! He said I tested so highly positive on the blood test that he was not concerned about even giving me a biopsy unless I felt I needed one. The biopsy thing kind of freaked me out, so I passed. He also said everything you everyone has said. "It's all or nothing!" I either have to give up gluten completely or I'm never going to get better and continually cause myself damage. I'm trying to stay positive and think about how much better I will feel but I have to admit I thought I was going to cry in the grocery store today as I read labels and walked past the bakery section.

* Let me verify then, I simply have to look for wheat, barley, rye and oats on food labels right? I hope I can do this!

-Thanks to everyone for your answers and support. I've felt a bit alone in this but feel so much better with all of you on this forum out there. I feel lucky I've found this site and that such wonderful people are willing to give of their time to answer questions from a confused girl like me.

lizard00 Enthusiast
lizard00
Posted
Well I went to the specialist today! He said I tested so highly positive on the blood test that he was not concerned about even giving me a biopsy unless I felt I needed one. The biopsy thing kind of freaked me out, so I passed. He also said everything you everyone has said. "It's all or nothing!" I either have to give up gluten completely or I'm never going to get better and continually cause myself damage. I'm trying to stay positive and think about how much better I will feel but I have to admit I thought I was going to cry in the grocery store today as I read labels and walked past the bakery section.

* Let me verify then, I simply have to look for wheat, barley, rye and oats on food labels right? I hope I can do this!

-Thanks to everyone for your answers and support. I've felt a bit alone in this but feel so much better with all of you on this forum out there. I feel lucky I've found this site and that such wonderful people are willing to give of their time to answer questions from a confused girl like me.

Sounds like you have yourself a pretty good doctor there. Hang on to him, they are hard to come by!!

It's a harsh reality when it sinks in that this is for the rest of your life. But I find that, if you tell yourself you CAN'T have it, you begin to feel deprived. What has really worked for me is making a conscious decision to eliminate gluten from my diet. That way, I know that I can if I want to, but I CHOOSE not to because I know how horrible I will feel.

But, meanwhile, if you have a breakdown, it's OK!! I broke down over pizza one night, not so much because I couldn't have it then, but I realized that there's no where I can get it if/when I do. Cry if you need to.

It gets easier though. Every day gets a little easier, foods get easier to find, and as you feel better and better, you begin to forget about the nasty little protein called gluten. :angry:

curlyfries Contributor
curlyfries
Posted
* Let me verify then, I simply have to look for wheat, barley, rye and oats on food labels right?

Well...that's not exactly all there is to it. For example, barley especially can be hidden in other ingredients like "natural flavors". If I were more computer literate I could give you the link to click on, but here is a good one to start with...

Open Original Shared Link

When I first started it was so overwhelming, because it was so hard to tell what was safe and what wasn't. The search engine on this forum became my best friend. And sometimes I have e-mailed companies and asked them.

Here is a website that will make you feel more confident at the grocery store....www.glutenfreeindy.com/foodlists/index.htm

Hope this helps

lisa

aikiducky Apprentice
aikiducky
Posted

You can start right here on celiac.com, there's a safe ingredients list and unsafe ingredients list if you go to the main site (celiac.com). Label reading is a bit of a hassle in the beginning but don't worry, you'll get used to it. :)

Pauliina

mftnchn Explorer
mftnchn
Posted

I've lived on this website--its been my best friend!!

I ditto what everyone else has said, though I add the comment that it takes 1-2 years for the adult intestine to heal though many feel quite well much sooner than that.

Be prepared for a real learning curve, and recognize that you are entering a major life transition so it will be hard and will take months to be "at home" with it. Hang in there.

I rarely miss gluten containing foods--we have been able to make so many good substitutes. I serve these to people and they can't tell the difference. The issue is you have to cook a lot more from scratch, eating out is extremely limited both in other's homes and in restaurants. Larger groups are easier--no one notices that I am bringing my own food. I travel for work a lot, and have to carry all my own food (I live overseas). That part is hard.

My husband and I are meeting people more often for "Starbucks" where people don't notice that I don't have a coffee or drink, and we have a wonderful time visiting. People are more uncomfortable when I don't eat a meal when we are together and ask more questions.

Wishing you well and hope that we'll see you here posting.

Lizz7711 Apprentice
Lizz7711
Posted
Would you mind sharing where you found that study?

Here's the reference and abstract:

Title: A milligram of gluten a day keeps the mucosal recovery away: A case report

Source: Nutrition Reviews [0029-6643] Biagi yr:2004 vol:62 iss:9 pg:360 -363

Abstract (Summary)

In recent years it has been suggested that patients with celiac disease can be adequately followed up on the basis of merely clinical and serological response to a gluten-free diet. Thus, a duodenal biopsy some months after commencement of a gluten-free diet would no longer be necessary. We report here the case of a celiac patient in whom the ingestion of a milligram of gluten every day for 2 years prevented histological recovery in spite of satisfactory clinical and serological response. The literature regarding the minimal amount of gluten that could be harmless to celiac patients is reviewed. [PUBLICATION ABSTRACT]

I have the article if you want to email me...I can't post the link because I have access through a univeristy, oif you try to access it I think they'll ask you to pay for it.

Liz

ThatlldoGyp Rookie
ThatlldoGyp
Posted
Would you mind sharing where you found that study?

Hi,it is a Romanian study, I am trying to find it in English, or try it with a babelfish program that can translate it well enough. I know that isn't much of a help. But roughly translated it said, " that the intake of .5 mg of gliadin per week for 2 yrs on otherwise asymptomatic celiac Catholic women did not show complete recovery of villi". They did duodenual biopsies, I didn't remember that right, sorry! I also do not know how this study has been reviewed, how it was done, and any peer comments about the study as I do not have access to all the articles or the ability to translate everything. I just got to read the summary. I am assuming that the wafers the women were eating was not the almost gluten-free wafers (.01) that most celiac catholics use, if they have access to them, which I am sure these women did not. However, this does drive home how little it takes to set some of us off. .5 mg once a week is not that much, and yet they still had damage. It is good enough for me to take note!

this is the article about the almost gluten-free wafer that is used in areas that can get them.

Open Original Shared Link

I am not an expert, by the way, I was repeating what I read (or at least to the best i could understand) and was astonished by. It makes me sad for celiacs who may not have access to the gluten-free wafers and I wish the church would take that into account. To choose between your health (or not) and your religon must be terrible.

Oh, thank you Lizz! I just saw your reply! Thanks so much. I was pretty useless there!

KristaleeJane Contributor
KristaleeJane
Posted

My blood work came back high too, at 92 units with a normal range being 20. The reason that you should have the biopsy is that these result are 95% accurate. Meaning that the biopsy can confirm it. Considering this is something that doesn't go away and you need to be gluten free for the rest of your life the biopsy is necessary, thats what my doctor said. I have the biopsy in one week. Although I have read on here how unpredictable the results can be that makes me very weary, so regardless I am going gluten free after my biopsy>

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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