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They Want To Do The Biopsy

newburyport

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newburyport Newbie
newburyport
Posted

Hi everyone,

I have been wheat-free since December and Gluten-avoiding since January, and am feeling 1000 times better.

I have had unexplained chronic fatigue and anemia in the past as well as a few kidney stones.

I am a 28 year old, 5'7" female. I normally weigh about 117, but by 2008 I had gone up to 136.

Then I started having chronic constipation, extreme bloating and styes in my eyes every day. After removing all medications, dairy and finally going vegan, I stopped eating wheat for 3 days and my eyes cleared up completely.

My naturopath has me on an anti-inflammatory diet after regular docs insisted i was "just getting old" and "needed more fiber" - also on probiotics, digestive enzymes

All of these things have cleared up since avoiding gluten:

-Am finally back down to normal weight

-Bloating and constipation significantly better

-No more trouble sleeping (my fiance would wake me up every night saying i wasnt breathing right i was on my back

-Styes are gone

-Itching skin on shins is gone

-No more pains in sides (I was attributing this to kidneys/stones but now who knows)

-Face less swollen

-Gums are bleeding less

-Mouth ulcers are gone

-Apppetite is coming back

I was allergy tested, and a few things came up on the prick test but no allergies were present for the bloodwork. I have low vitamin D25, but am taking supplements now

I also had the Anti-Tissue Transglu IgA Ab tested and it was 12.3 (negative was <20), but I had already been at least wheat free for a few weeks at that time.

Both the naturopath and the new GI doctor I just saw today want me to have the biopsy done. The last time I accidentally ate gluten I got a huge fever and aches all over, but he says that's not a symptom. I searched here and it seems like it is a symptom for some people. GI doc wants me to get the biopsy in 2 weeks from today and eat gluten up until then.

From reading here, it seems like 2 weeks is no where near enough time for the "gluten challenge" - has any one gotten a positive result after a challenge?

I am not sure whether to go through with it. I am finally just starting to not crave the gluten and feel normal after a year of suffering. I am considering sending out for enterolab. Please let me know your experience with the biopsy and challenge?

Thank you so much!

~newburyport

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rinne Apprentice
rinne
Posted

Hi. :)

My blood work was negative but, like you, I had been gluten free and I decided against the endoscopy because I was unwilling to go back to eating gluten. Dietary response is a legitimate tool for diagnosis and it sounds like you have had a wonderful response to going gluten free.

I also have some problem with the reality being that what they are diagnosing is damage and in order for them to tell me I have a problem I have to damage myself further, this just doesn't make sense to me.

As you have noticed others share your symptoms, gluten affects our whole system and the ways it does are amazing. At one point a group of us noticed that if we had been glutened we had problems wearing pierced earings, weird but true. :lol:

I hope you continue healing on the gluten free diet.

PinkLady Newbie
PinkLady
Posted
Hi everyone,

I have been wheat-free since December and Gluten-avoiding since January, and am feeling 1000 times better.

I have had unexplained chronic fatigue and anemia in the past as well as a few kidney stones.

I am a 28 year old, 5'7" female. I normally weigh about 117, but by 2008 I had gone up to 136.

Then I started having chronic constipation, extreme bloating and styes in my eyes every day. After removing all medications, dairy and finally going vegan, I stopped eating wheat for 3 days and my eyes cleared up completely.

My naturopath has me on an anti-inflammatory diet after regular docs insisted i was "just getting old" and "needed more fiber" - also on probiotics, digestive enzymes

All of these things have cleared up since avoiding gluten:

-Am finally back down to normal weight

-Bloating and constipation significantly better

-No more trouble sleeping (my fiance would wake me up every night saying i wasnt breathing right i was on my back

-Styes are gone

-Itching skin on shins is gone

-No more pains in sides (I was attributing this to kidneys/stones but now who knows)

-Face less swollen

-Gums are bleeding less

-Mouth ulcers are gone

-Apppetite is coming back

I was allergy tested, and a few things came up on the prick test but no allergies were present for the bloodwork. I have low vitamin D25, but am taking supplements now

I also had the Anti-Tissue Transglu IgA Ab tested and it was 12.3 (negative was <20), but I had already been at least wheat free for a few weeks at that time.

Both the naturopath and the new GI doctor I just saw today want me to have the biopsy done. The last time I accidentally ate gluten I got a huge fever and aches all over, but he says that's not a symptom. I searched here and it seems like it is a symptom for some people. GI doc wants me to get the biopsy in 2 weeks from today and eat gluten up until then.

From reading here, it seems like 2 weeks is no where near enough time for the "gluten challenge" - has any one gotten a positive result after a challenge?

I am not sure whether to go through with it. I am finally just starting to not crave the gluten and feel normal after a year of suffering. I am considering sending out for enterolab. Please let me know your experience with the biopsy and challenge?

Thank you so much!

~newburyport

PinkLady Newbie
PinkLady
Posted

Hi Newburyport,

Since we are both on the No. Shore and I have only been dx/d (by blood test) about 2 weeks..I am looking for a good GI person as

well as interested in naturopath...wondered if you oculd share the names of your docs...if they come highly recommended! I don't

want to have the endoscopy either! :huh::lol:

Thanks

ravenwoodglass Mentor
ravenwoodglass
Posted

I am always reluctant to tell of my experience on my gluten challenge after being gluten-free just for a little over a month. I also had a great response to the diet and my GI insisted that I do the challenge for confirmation and an 'official' diagnosis. I got my diagnosis but not because I had the biopsy I got it because the challenge made me so sick it caused me to be laying on my bathroom floor bleeding on the morning of my biopsy. I got my diagnosis but it was at a great cost. Most do not have the extreme reaction I did, most just get a recurrance of the symptoms they had before they went gluten free. Celiac is the only disease I know of where doctors will want to take someone who has had great relief from symptoms and make them even sicker to 'prove' they can't have something in their system that is slowly killing them.

You do not need a doctors permission to do the diet. There are doctors who are now going by dietary response and blood work. If you have had a good response to the diet and you don't feel that a formal diagnosis is needed for you to be compliant with the diet it is your choice whether you want to do a challenge or not. You also should be back on gluten for at least 3 months before the biopsy is done and even then you risk having a false negative if damage is patchy or if your villi are not totally destroyed.

RiceGuy Collaborator
RiceGuy
Posted

I agree with what has already been said. You do not need to get a biopsy unless you yourself think the dietary response is coincidental, and if you have no intentions of following the gluten-free diet unless a doctor tells you to.

It does take more than two weeks of gluten-eating to get damaged enough for the biopsy, and as others have stated, even then it's not a sure thing. Your dietary response tells you quite clearly, even if it's not Celiac, that gluten makes you ill. But just consider what you'd do if the biopsy is negative. Would you really go back to how you felt before?

I guess it comes down to how much you want to know if it's Celiac, or gluten intolerance, and how much faith you put in the tests.

There's that old joke where the patient says to the doctor "It hurts when I do this", and the doc replies "Then don't do that".

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I also agree that there seems to be no pressing need for a biopsy/endoscopy for you.

If these doctors give you any grief, you can say:

1) What about "first do no harm?" What are their reasons for asking you to ingest something that makes you ill? (And, no, 2 weeks is not nearly enough to re-damage your villi.)

If you reacted to peanuts, would they ask you to continue eating peanuts until you had an anaphylactic reaction, and only THEN say that you have a problem with peanuts?

2) There seems to be a slight conflict of interest here: they are asking you to damage yourself for a test that, under their conditions (2 weeks), is not likely to be accurate, but is almost certainly going to damage your health, all for an answer that you already have. The only obvious difference is, this test has a significant effect on their bank accounts.

3) You can fire these doctors AND report them to the insurance industry for fraud (why do an expensive, invasive test when the answer is already clear, by previous blood work AND by dietary response). And I would tell them that you intend to report them--and do so.

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Jestgar Rising Star
Jestgar
Posted

It's YOUR body and YOUR health.

Do YOU want the biopsy?

newburyport Newbie
newburyport
Posted
  • Author

Hi and thank you so much for reading my post. I agree that it seems ridiculous to do this to myself with the slim chance of a diagnosis. The doctor seems concerned about gluten-free, that it is such a restrictive diet, but I am already on it anyway. And chances are the biopsy will be negative, he said so himself, and then I'll be exactly where I am now.

I will continue to not eat gluten/wheat after whether it's celiac or not because of the uncomfortable reactions, - i cant live the way i lived this year with bloated-pregnant belley and constipation. it was so depressing. and even if i used products with wheat -shampoo, etc. i get the styes in my eyes. I can't go around like that. I am assuming I am just extremely intolerant for whatever reason.

The thing is, they diagnose things like high blood pressure, but they don't go telling the people to go eat fatty red meat to make sure their blood pressure goes up. Same thing with lactose intolerance - no one would get a diet of cheese for 8 weeks to "make sure". I guess I am worried that I will never truly "know". And that this is my last chance to take the biopsy since it is getting to be so long since I've had gluten. And also worried doctors in the future wont take me seriously without "diagnosis". They never took my symptoms seriously in the first place. They said I didnt have it because I didnt have diarhea. And that was the end of that. No one took tests or even looked at my gigantic stomach.

Do you all know, can they do the bloodwork panel for celiac after the gluten challenge if i chose to do it? Will the numbers be up in that time ?(i only had the one test after being gluten-free).

Also, since getting less constipated and being on the diet, I still have bits of undigested food in my stool, which worries me, does this clear up as you heal? Somehow I feel like having the doc look around on the endoscopy just to make sure something else isnt going on (though i seriously feel it isnt)...but perhaps colonoscopy is the best for that?

Thanks so much for your support everyone :)

hugs,

~newburyport

(p.s. - pinklady - i actually live in RI - sorry,confusing name! )

newburyport Newbie
newburyport
Posted
  • Author

one more question!

This reminded me...GI had paperwork from a biopsy that i didnt even know about in 2006 when I went in for upper endoscopy for gastritis. Results just said "normal" He said they might have done the biopsy because I was low in iron, but at that time i had none of these symptoms i had now. He also said they might have been sampling a different area than he would be for these symptoms.

GI doctor said that the villi never heal fully, even though they are not flat anymore after going gluten-free (is this what "blunting" refers to?) and he would possibly be able to tell if they had been damaged at all in the past? Is this accurate?

CMG Rookie
CMG
Posted

Have you had genetic testing done? I was gluten-free/ gluten-lite for over a year and had symptoms every time I did eat gluten; so, I had genetic testing done and found that I have HLA-DQ2, which puts me at high risk of celiac.

I did decide to do the gluten challenge and endoscopy for a couple of reasons. First, I thought it would help me determine how strict I need to be about cross contamination - strict if it's celiac, less so if it's gluten intolerance. Second, I thought it would cause others (family and future doctors) to take the issue seriously.

I'm still waiting for biopsy results, but the gluten challenge caused so many diverse symptoms that I have no desire to ever eat gluten again (although I still don't know how much I should worry about cross contamination, since I don't seem to get symptoms from small amounts).

The immediate benefit to having had the endoscopy is that the doctor identified that I have a hiatal hernia and reflux esophagitis. We'll discuss what this means when I go in for my biopsy results; but, without the endoscopy I would not have been aware of these issues.

Also, my family finally recognized that I really do get sick from gluten. They are all very supportive now and planning on getting themselves (children included) tested.

Finally, as for duration of the gluten challenge, by the time I had my GI appointment I had been eating 3-4 servings of gluten a day for 3-4 weeks and at least 1 serving a day for about 3 weeks before that. (In "Celiac: The Hidden Epidemic" Dr. Green suggests that 4 servings a day for a month is sufficient for biopsy purposes.) Based on my symptoms, my doctor thought what I had been doing was enough to get a valid biopsy. I had the biopsy the next day and now have been gluten-free for 6 days. I feel so much better!

Sorry for the length of this post, but I hope it helps in thinking through your decision.

Gemini Experienced
Gemini
Posted
one more question!

This reminded me...GI had paperwork from a biopsy that i didnt even know about in 2006 when I went in for upper endoscopy for gastritis. Results just said "normal" He said they might have done the biopsy because I was low in iron, but at that time i had none of these symptoms i had now. He also said they might have been sampling a different area than he would be for these symptoms.

GI doctor said that the villi never heal fully, even though they are not flat anymore after going gluten-free (is this what "blunting" refers to?) and he would possibly be able to tell if they had been damaged at all in the past? Is this accurate?

newburyport.....your GI doctor is insisting on a biopsy even though you have had huge dietary response AND now tells you that villi never fully heal? I think you need to dump this person immediately! :o I did not have the biopsy because, like yourself, I had so many symptoms of Celiac AND my blood work was in the stratosphere. My tTg was 200 so that will give you an indication of intestinal damage. I was also losing 1 pound per day and was very close to being hospitalized.

Let me tell you, my villi are healed and I would challenge any doctor on that. For the first time in my life, I broke the 105 pound mark and now am a "fat" 113! :lol: You don't recover like that if your villi aren't completely healed. I was 97 pounds and falling rapidly on the day I started the gluten-free diet and never looked back.

You also state that you have had anemia problems so that's another clue that should convince you that you should not eat gluten. I was a life long anemic person and now am not.

Blunting is a term used to describe shortened villi that are not completely trashed. They can actually disappear if someone goes long enough but can be repaired with a good gluten-free diet and patience. Sounds like the doc is full of himself about being able to tell if there was damage in the past because if any GI doc does an endo and doesn't see blunting or trashed villi (end stage), they will tell you that you are fine....no Celiac. But this guy claims he can tell (possibly) if a person is Celiac after they have adopted a gluten-free diet and have healed? That's a first! <_< The tissue is also studied under a microscope because villi cannot be seen with the naked eye so I am perplexed as to what he meant.

Only you can decide whether a biopsy is important enough to do a challenge but like everyone has stated here, you are going to need to eat gluten for much longer than 2 weeks. Trust your instincts and much luck to you!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
The immediate benefit to having had the endoscopy is that the doctor identified that I have a hiatal hernia and reflux esophagitis. We'll discuss what this means when I go in for my biopsy results; but, without the endoscopy I would not have been aware of these issues.

I was diagnosed with both hiatal hernia and reflux esophagitis 20 years ago--without an endoscopy. I'm curious why your doctor would not have picked this up before. Also curious to hear what he has to say about what it means.

CMG Rookie
CMG
Posted

He didn't pick it up before because I had never been to him before. I haven't been to a GI doc in about 15 years. Back then I was told that all my symptoms were stress related. Then I just assumed it was gallbladder related since everyone in my family seems to have their gallbladders removed. I finally started pursuing this last year when my daughter (then 4) got sick and my sister thought my daughter's symptoms were similar to another child she knew with celiac. So, I'm finally on the right track for both myself and my daughter, with all new doctors, because we just moved.

I'll let you know what he has to say about the hernia and esophagitis. My appointment is not until Feb. 25th.

cmom Contributor
cmom
Posted

After reading all these posts and my own experience, I get so angry that doctors do not listen and pretend to know about issues when they really know nothing. And don't even get me started on the "all your issues are stress-related" thing. I was sent to a psychiatrist for my celiac issues!!! Sorry, just needed to vent and sympathize. :angry:

newburyport Newbie
newburyport
Posted
  • Author

"But this guy claims he can tell (possibly) if a person is Celiac after they have adopted a gluten-free diet and have healed? That's a first!"

You're right, Gemini - it really doesn't make sense. If he can tell I had damage in the past then why the heck would I need to do the challenge at all. Good point.

I have a lot to think about. Unfortunately the single blood test I had was negative probably since I was wheat free and gluten light at the time.

I am thinking of eating something gluteny maybe one or two more times, seeing what reaction I get, phoning this new GI and telling him how i feel and cancelling this biopsy.

Luckily all my friends and family are supportive of my gluten-free diet since they have seen the positive changes I have had with it.

It has been such a long time to figure out what makes me feel this way and I didnt have help from any doctors. I dont want to put myself through feeling horrible again to convince a doctor I've met once. Knowing it is celiac for sure would be nice, but the chances seem so slim at this point.

CMG, thank you for your post, I appreciate it. I think I am going to order the genetic testing from enterolab and the stool test too. Would you please post something when you get the biopsy results? I would be interested to know how the challenge worked for you!

Does anyone know of anyone who had a positive result on the biopsy with the "gluten challenge" after being gluten-free for a while?

Thank you,

newburyport

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      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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