Do I Need To Have The Biopsy Done?

[pinksmashing]

Hi everyone. I really had no symptoms but my 'new' doctor had run the Celiac Disease Comp Panel run because I have hashimoto's thyroiditis. She said there was a correlation between that and celiac disease. My test results I cannot understand. She said I had celiac sprue. Does that mean I have the disease or the intolerance? My test results were:

Transglutaminase IGA AB: 63 (which is high/positive)

Endomysial AB (IGA): Positive H

Endomysial AB TITER: 1:80 H

IGA, Serum: 161 NEGATIVE

The IGA serum was negative but I showed signs of other positive IGA..what does this mean? Am I gluten intolerant or do I in fact have Celiac Disease? Should I get the biopsy (Tissue Transglutaminase) done? My doctor was real vague and said well you'll need to stay away from gluten anyway so why does it matter. Well one gives you a stomach ache and the other you can get cancer, crohn's etc...BIG difference. Why are doctors so inconsiderate?

What would you recommend?

Thanks

Pam

[TrillumHunter]

I learned a lot from Celiac Disease: A Hidden Epidemic by Dr. Peter Green. It is well worth having.

My dr. did not think an endoscopy was necessary. Many physicians agree with this approach. I think it is up to you. One thing to remember is that a negative endoscopy DOES NOT mean you don't have celiac. The pillcam may be the answer to the positive bloodwork/negative biopsy problem but it can be hard to get.

Incidentally, I did have a endoscopy 18 months after my diagnosis because of gastritis and my gallbladder. I'm not against endoscopy but I think it is very flawed.

[FMcGee]

I agree that the endoscopy is done. I had a diagnostic endoscopy/biopsy and it all went fine, but it's up to you and your doctor. The doctor was able to see how atrophied my small intestine was and give me some feedback, which I've found useful (as does he) but that is not always the case, either. Everyone has to make the individual call on this one, I think.

[Roda]

Wow I am impressed your doctor suggested it. Many of people find it rather difficult if not impossible to get the testing done. I researched it my self because of my vague symptoms and the fact I have hashimoto's. I asked for my blood work but at least my doctor was willing to order it for me. I had the egd with biopsy done also. I personally wanted a more difinative answer and I was having such horrible heartburn. I figured if anything else was going on it was worth it to have it checked out. My doctor noted distal esophagitis, did a stomach biopsy for h-pylori which was neg., noted abnormal small bowel mucosa, and took 6 random biopsys from the small bowel. I also had a colonoscopy done because I had a history of anemia and a positive hemocult stool test. Otherwise I was not really having any lower gi issues (or so I thought). I have battled constipation since I was a child. I didn't figure they were going to find anything, but did it for my kids and peace of mind. Everything was normal and they removed a polyp. I don't regret having it done. It's entirely up to you to decide what is best for you.

[TrillumHunter]

I forgot to say that I think you have a pretty savvy doctor. If your only symptom is Hashimoto's and she did a celiac panel then she is way ahead of the curve on autoimmune issues. I would trust her.

[curiousgeorge]

With those numbers you have celiac.

Serum IGA isn't a celiac marker but the others are. Serum IGA just tells you your immune system is working proprely and at 161, its within the normal range which means the other values are valid.

I had similar numbers on my bloodwork and had the biopsy. I went to see an inernest a while later and he asked why I'd even had the biopsy given how positive I was. I think its important you take this a celiac and if you want a biospy seek one out but do so whle still eating gluten.

[pinksmashing]

Thank you for all the great messages. I didn't realized the serum IGA wasn't a celiac marker and the others were. I just felt pretty stranded by my doctor after she told me. She said go see a nutritionist and no followup besides thyroid bloodwork in 6 weeks. Is this typical when you are given results like this?

She also told me that only gluten in the GUT will cause issues but not lotions, shampoos etc. Is this true? I am reading varied articles and want to make sure I am doing the right thing.

I'm also curious about the biospy to see what kind of damage I have done to myself so far. She through out cancer, crohn's and many more diseases I could get but didn't want me to get the biopsy. i just find it odd you tell someone this kind of info and then leave them on their own.

thanks again

Pam

[GottaSki]

I'm also curious about the biospy to see what kind of damage I have done to myself so far. She through out cancer, crohn's and many more diseases I could get but didn't want me to get the biopsy. i just find it odd you tell someone this kind of info and then leave them on their own.

thanks again

Pam

I had an endoscopy that confirmed celiac. My blood tests only marginally indicated celiac. Everyone is different. I'm 44 and there was significant damage to my small intestine. I'll be having a follow up biopsy at a year -- docs are confident that I can repair my body with diet. I am glad that I had the endo, but we've taken a different path for my kids...

We decided not to push for an endoscopy with my two teens...each has different medical symptoms that suggest celiac to us. I had their blood work done and like mine the blood tests were only marginally high. My 15 year old went gluten-free three weeks ago and is improving. My 14 year old is still considering going gluten-free (he has many autoimmune symptoms -- tests over the years have always been "normal" (my blood tests were also "normal" for over 20 years except for anemia in my 20s and 30s) -- he'll likely be gluten-free by in the coming weeks as most food in our house is gluten-free and I am gaining ground on replacing all our gluten favorites...including decent bread.

I also have a 20 month old grandbaby (his mother/my daughter diagnoses with lupus at 13) that had many food allergies...once gluten was removed upon my diagnosis he has been thriving -- this was probably the happiest news during my first gluten-free weeks.

[Gemini]

Thank you for all the great messages. I didn't realized the serum IGA wasn't a celiac marker and the others were. I just felt pretty stranded by my doctor after she told me. She said go see a nutritionist and no followup besides thyroid bloodwork in 6 weeks. Is this typical when you are given results like this?

She also told me that only gluten in the GUT will cause issues but not lotions, shampoos etc. Is this true? I am reading varied articles and want to make sure I am doing the right thing.

I'm also curious about the biospy to see what kind of damage I have done to myself so far. She through out cancer, crohn's and many more diseases I could get but didn't want me to get the biopsy. i just find it odd you tell someone this kind of info and then leave them on their own.

thanks again

Pam

Your doctor is correct on the shampoo and lotion issue. If you feel you cannot use these products without ingesting them into your mouth, I would suggest finding gluten-free alternatives you are happy with.

Otherwise, it should not be a problem, unless you have an additional wheat allergy, which is a different animal than an intolerance. Gluten cannot be absorbed through your skin as the molecule is too large.

The choice of whether to go entirely gluten-free, including topical products, is one you will have to make yourself, depending on how well you do. Welcome to the club! Don't sweat this....after a short time you'll be an expert if you put a little effort into it!

[Fiddle-Faddle]

There are many celiacs who have reported reactions to gluten-containing lotions, though the current medical thought indicates otherwise. If you are prone to any kind of skin rashes, I WOULD avoid gluten-containing lotions, as it is quite possible that those celiacs who are prone to skin rashes have either an additional kind of sensitivity to gluten or an additional presentation of symptoms.

The celiac vs. gluten intolerance issue has been hotly debated here for years, and each camp is convinced it is right. You should be aware of all sides of the issue. It does seem like a growing number of specialists are considering that gluten intolerance can often be early-stage celiac--that is, celiac disease caught before the villi are damaged enough to warrant the celiac diagnosis. This makes a lot of sense for those whose celiac is only triggered as adults.

There are also plenty of people (many of whom used to be here--you can search back a few years to find there posts here) whose doctors insisted that they couldn't possibly have celiac, their tests were all negative, etc--and then, after years of bouncing from doctor to doctor (and getting worse and worse), somebody finally either read their tests correctly or ordered the correct tests and diagnosed them. In the meantime, they developed more and more autoimmune disorders--and those can be quite as devastating as any cancer. Just ask anyone with lupus, or MS, or fibromyalgia, or...

Gemini's post, above, indicates that people with symptoms but without positive test results end up DAMAGING themselves by eating gluten until the test results are "positive enough."

As far as the endoscopy is concerned, my doctor put it well, "There is a certain morbidity rate associated with any invasive procedure, though it is small, and I won't refer you for one unless I'm convinced you NEED it."

In your case, it doesn't sound like you NEED it. You already know what you have, and it really doesn't matter how much damage is there since you already know what is causing it, and what will cure it. Satisfying curiosity is not a good reason for an invasive procedure.

Kudos for your doctor for both recognizing this fact and for not being greedy (endoscopies are big money-makers).

The pillcam, as mentioned above, sounds like a really good option if you can't stick to the diet without knowing that you've already caused significant damage, and if your insurance will cover it.

[pinksmashing]

I had muscle testing done on wheat/gluten and it showed no signs of any issues. I don't believe I have celiac. I have NO symptoms and my doctor has made up issues i don't have. I get heat rash from hiking on my ankles and she said it was HD. She's never seen it. I ONLY get it when I hike. Its only under my socks on hot days I hike. there are no blisters and its gone in a day or two. I don't trust my doctor to what she diagnosed me to because she had no clue I was even 40 years old when I went into her office even though she has my chart etc. She seemed quick to jump to conclusions and I don't trust her with all the misdiagnosis she's done already.

[GottaSki]

The endo/biopsy gave us long awaited decisive answers. When my primary first called my with Celiac Dx and referred me to Gastro I didn't think she had found the cause of my many symptoms...mostly because a lot of info on the net refers to weight loss and D. I've been steadily gaining unexplained weight for years, joint issues and heat intolerance (this symptom is not likely related to Celiac).

My GI is a Celiac Specialist....I met with him and he thought there was enough indicators to do the biopsy for confirmation....My tTG IgA was only barely over "normal". I did have photographs of the severe bloat I would get most evenings (I'm 44 - this became steadily worse over the past 4-5 years) and pics of my first ever celiac rash this past winter.

The endo revealed severe damage to my villi, biopsy in 3 places all indicated Celiac.

Don't think I would have been able to stick to the gluten-free lifestyle had it not been for that endo. I have had improvement with my gut issues and am hopeful for more improvement to my health with time and healing.

I'm interested in the heat rash you mentioned on your ankles while hiking. Do you ever get more tired while hiking in the heat than you would if is cool out? I've always gotten red in the face with exercise, but it never slowed me down until the past 5 years...now I can ride 20 miles in the early morning, but can't walk around the block after noon. I now get a very, very, very red face (kind of a burning sensation), tire out extremely easily and have a bit of a hard time breathing when I'm out in the sun. Docs just dx'd this as heat induced urticaria (basically allergic reaction triggered by heat in the hives family) -- more studies needed, but I was hoping it was related to celiac and would improve with time and healing.

Thanks!

[FMcGee]

Ooh, I have heat intolerance too. It never occurred to me that it might be celiac-related, and I'm not convinced that it is. Then again, I live in Florida, and no one really tolerates the heat here, so I'd have no idea if gluten-free was working in that regard. Fingers crossed for both of us.

[Fiddle-Faddle]

pinksmashing, it sounds like you have a huge case of...denial.

Your blood work says that you do have either celiac or gluten intolerance, which is treated by diet, the same way as celiac. Muscle testing does not diagnose celiac disease, which is not a wheat allergy, but an autoimmune response.

You also have autoimmune thyroid disease, and your "new" doctor is quite right--it does go hand in hand with celiac.

You have a chance to avoid serious, possibly permanent damage with a simple diet change. Or you can push for more testing to tell you what you already know from the blood work. Or you can pretend that the blood tests never happened, and hope that if you ignore it, it'll all go away.

You might go a long, long time without symptoms--but that doesn't mean that you're not being damaged, both intestinally and immunologically.

People without gluten problems do not make antibodies to it, nor do they make gluten-specific autoantibodies (antibodies to their own organs).

[pinksmashing]

pinksmashing, it sounds like you have a huge case of...denial.

Your blood work says that you do have either celiac or gluten intolerance, which is treated by diet, the same way as celiac. Muscle testing does not diagnose celiac disease, which is not a wheat allergy, but an autoimmune response.

You also have autoimmune thyroid disease, and your "new" doctor is quite right--it does go hand in hand with celiac.

You have a chance to avoid serious, possibly permanent damage with a simple diet change. Or you can push for more testing to tell you what you already know from the blood work. Or you can pretend that the blood tests never happened, and hope that if you ignore it, it'll all go away.

You might go a long, long time without symptoms--but that doesn't mean that you're not being damaged, both intestinally and immunologically.

People without gluten problems do not make antibodies to it, nor do they make gluten-specific autoantibodies (antibodies to their own organs).

I wouldn't say I'm in denial...I just want to know if it is celiac or intolerance. I've heard so many stories of people being told they have celiac when they are only intolerant. I just want to know from the biopsy because I don't trust this doctor. She's jumped to too many conclusions too fast without evidence. I am going to stop writing on this site for now because it is not good for me at this time.

[Roda]

If you are unsure about your doctor maybe find another one and discuss the testing with them. I know it can be frustrating when you don't feel good. I have hashimotos too and the other poster is correct that they occur together frequently. My endocrinologist told me that after I pursued testing. I finaly asked for the blood work after two years of unexplained anemia and low ferritin. I didn't percieve any other problems with me at that time. Only after a positive diagnosis did I relate the constant heartburn. I know that if it is a gluten intolerance or full blown celiac the treatment is the same. I feel so much better. But I can understand wanting to know for shure. I probably would not have taken it as serious if my biopsy had not confirmed it, but now after reading alot of other people's stories I realize that an intolerance without damage is something to take serious also. I hope you find out what is going on and feel better soon.

[Gemini]

Gemini's post, above, indicates that people with symptoms but without positive test results end up DAMAGING themselves by eating gluten until the test results are "positive enough."

Oh, I don't think so! The poster asked if a Celiac needed to go gluten-free on topical products and I answered with the most up-to date medical information that's out there.

Are you suggesting that the current information is incorrect? I don't know how you came to this conclusion from my short answer. I never addressed whether or not someone was in denial or didn't have a proper diagnosis.

Any topical reaction is not an internal Celiac reaction so shouldn't be confused with one. There ought to be a class.......

[Fiddle-Faddle]

I'm so sorry, Gemini, I didn't mean to misquote you. Reading back, I'm guessing that I confused your post with GottaSki's. I will edit my previous post.

I don't recall either posting or thinking that you addressed anybody's issue with denial or lack of proper diagnosis, either--???

My understanding is that people with DH but without classic wheat allergy have often reported serious reactions to gluten-containing lotions, and I have also had first-hand experience with this--with myself, with one of my children, and with a friend's child. If this is not in accordance with current medical information, then yes, I would believe the current medical information to be incorrect.

Internal reactions can certainly open the door to topical reactions. For example, many of us here have noticed that previous skin sensitivity to nickel vanished after removing gluten from the diet.

[Fiddle-Faddle]

Oops, sorry, Gemini, I can't edit my previous post where I made the error that you pointed out.

[ravenwoodglass]

I wouldn't say I'm in denial...I just want to know if it is celiac or intolerance. I've heard so many stories of people being told they have celiac when they are only intolerant. I just want to know from the biopsy because I don't trust this doctor. She's jumped to too many conclusions too fast without evidence. I am going to stop writing on this site for now because it is not good for me at this time.

I do hope you come back and continue to learn about this disease. Your positive blood work is diagnostic and even if your doctor has been known to jump to conclusions with the positive blood work this isn't one of those times.

Whether you are celiac or intolerant is really a moot point. Many that are deemed 'just' intolerant have impact on other organs than the gut. That impact can effect the thyroid, pancreas, skin, lymph system, and the brain, well pretty much any organ. If you are forming antibodies you have an issue with gluten and you need to avoid it. The term 'only' gluten intolerant makes it seem less serious than celiac, it is not. There is also a risk of a false negative with both blood and biopsy. And that risk is pretty high, the NIH estimates it at about 30%. I hope you don't risk the development of other autoimmune issues and get on the diet when all the testing you choose to do is done.

[pinksmashing]

Fiddle-Faddle and curiousgeorge-

Just so you know, I do not have celiac and just gluten sensitivity. I know these chat rooms are supposed to be a place where people go for help and support which is appreciated BUT the comments that came from both of you were completely uncalled for.

You should be ashamed of yourself for causing someone else more stress than what they were already going through.

[ravenwoodglass]

Just so you know, I do not have celiac and just gluten sensitivity.

I am glad your damage is not severe enough yet gut wise to be a definative diagnosis of celiac, or thought to be one. Your blood work is pretty clearly positive and I hope you are aware that the diagnosis of 'just' gluten intolerance does not mean that you are not suffering damage if you injest gluten. The damage can effect much more than the gut and be just as severe and life changing as the damage seen in biopsy defined celiac. Now that the blood tests are have become a bit more reliable with less false negatives some doctors are now even skipping the biopsy for diagnosis as that also has a good chance of showing a false negative. Please be just as strict with the diet as someone would with 'gold standard' celiac. I am not trying to scare you I am just trying to make it clear that gluten intolerance is serious and IMHO the word 'just' should never go in front of those two words as it gives the impression that it is less life altering than it really is.

You really are in a good place for support with any problems you have with beginning your gluten free, healthier life.

[pinksmashing]

Thank you for those with the kind words and concern. I am still avoiding gluten even though I do not have celiac because I've learned a lot about it and how overprocessed it can be. My previous doctor told me to prep for the bloodwork incorrectly. She told me to eat as much gluten as I could for 4 days before the blooddraw which was the cause of the elevated numbers. When I went back and ate normally before the bloodwork it was in the normal range. Good luck to you all and thank you to those of you that were sincerely concerned.