Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here And So Glad I Found This Place!

Boffin

Recommended Posts

Boffin Rookie
Boffin
Posted

Hello everyone! I'm so glad that I found you! I've only had a very brief browse around the site (I am officially at work! :unsure: ) but already it looks as though it will be really helpful.

I just stumbled across this forum via googling for information about coeliac blood tests. Let me tell you a bit about where I'm up to, if you can bear with me... Basically, I've had GI symptoms on and off for a few years (I'm 30), mostly diarrhea, bloating and wind, and had toddled off to the doctor complaining on and off about these and other symptoms (tiredness etc) for years. My doctor reckoned that it was very likely IBS and nothing more was done. Anyway, earlier this year when I went for my annual allergy review (I have a lot of food allergies - nuts etc) I requested the blood test for coeliac disease as I'd heard of this, thought that some symptoms fitted and though it would be worth checking. Three weeks (!) later I got the result through which read "coeliac serology positive - request confirmatory jejunal biopsy" and that is the stage that I'm now at.

So, I've had a lot of bumpf through from the local hospital, telling me how scary the biopsy is and what risks are involved etc etc and am waiting for an appointment. Meanwhile, I continue to feel rubbish and to eat gluten because I know that it has to be in my diet for the biopsy.

The thing is (trying to get to the point, honestly!) I am wondering how vital the biopsy is?

I've trawled the internet trying to find out the accuracy of the blood tests but with the hindrance of not knowing precisely what blood test was done. From what I can gather (but can't find out definitively) the test most likely to be performed in the UK is for EMA antibodies, and from what I can find out this test appears to be around 95 to 99% accurate and specific. I asked my GP what blood test was done (as my letter didn't say and I know an attachment was included to the doctor but not to me) and he said that it didn't say! In fact, my GP, although very nice, seems to know alarmingly little about coeliac disease generally. He has said to me that although the blood test came back positive that it's probably not all that accurate, especially with my other food allergies (which I didn't think would effect it). On the internet I find far more information about false negatives than false positives though.

Anyway, my GP referred me to a gastroenterologist but on seeing my blood test results that step has been bypassed by the hospital and they've put me straight in for the scary biopsy. The thing is, if it's so likely that they've done that then why is a biopsy necessary? While I wait I continue to eat gluten and therefore (probably) do further damage to myself!

I would be happy to try the gluten free diet to see if it helped without having the trauma of a biopsy. Maybe getting a second blood test might be an idea, also maybe checking for vitamin/nutrient absorption might be useful. The trouble is that as far as I can tell if I go down that route myself it seems that I won't get the back up of prescriptions for gluten-free food, dietician advice, checks for osteoporosis etc etc.

Can anyone offer any advice/suggestions? And sorry for this being such a long post!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Caeli Rookie
Caeli
Posted

I was diagnosed by blood test 16 months ago after complaining to doctors and being told I had IBS for the past 20 years. My opinion is that most doctors don't have clue about caeliac disease and when they don't have an explanation for intestinal problems they reach for the ubiquitous IBS, which personally I think doesn't exist - it should be titled DDK (Doctor doesn't know) or DNI(Doctor Needs Inservice). Anyhow, enough doctor bashing, I am sure most do try their best!

In regard to the biopsy, here in Australia you can't join the Caeliac society unless you are biopsy confirmed. I had a biopsy of my intestinal villi and was confirmed caelia with near total atrophy of my villi. I still don't fee the best after 1t months but there have been some improvements. My problem is I don't have complete control over m diet as I live in a comunity and we have our main meal prepared. Anyhow, I digress. I didn't feel a thing with my biopsy. In fact, the slight dose of anaesthetic was very pleasant and relaxing. No side effects or complications. Th funny thing is that having come too after the biopsy the nurse fed my gluten ladened sandwiches!! So typical!!

I think hospitals lgally are required to let you know of all he nasty possibilities about biopsies, but in the main I think they are pretty safe. I have had one from the mouth end and a couple from heother end over the years. I think the worse part is fasting and if you have an endoscopy having to be near a toilet while you are flushed through the day before!

Hello everyone! I'm so glad that I found you! I've only had a very brief browse around the site (I am officially at work! :unsure: ) but already it looks as though it will be really helpful.

I just stumbled across this forum via googling for information about coeliac blood tests. Let me tell you a bit about where I'm up to, if you can bear with me... Basically, I've had GI symptoms on and off for a few years (I'm 30), mostly diarrhea, bloating and wind, and had toddled off to the doctor complaining on and off about these and other symptoms (tiredness etc) for years. My doctor reckoned that it was very likely IBS and nothing more was done. Anyway, earlier this year when I went for my annual allergy review (I have a lot of food allergies - nuts etc) I requested the blood test for coeliac disease as I'd heard of this, thought that some symptoms fitted and though it would be worth checking. Three weeks (!) later I got the result through which read "coeliac serology positive - request confirmatory jejunal biopsy" and that is the stage that I'm now at.

So, I've had a lot of bumpf through from the local hospital, telling me how scary the biopsy is and what risks are involved etc etc and am waiting for an appointment. Meanwhile, I continue to feel rubbish and to eat gluten because I know that it has to be in my diet for the biopsy.

The thing is (trying to get to the point, honestly!) I am wondering how vital the biopsy is?

I've trawled the internet trying to find out the accuracy of the blood tests but with the hindrance of not knowing precisely what blood test was done. From what I can gather (but can't find out definitively) the test most likely to be performed in the UK is for EMA antibodies, and from what I can find out this test appears to be around 95 to 99% accurate and specific. I asked my GP what blood test was done (as my letter didn't say and I know an attachment was included to the doctor but not to me) and he said that it didn't say! In fact, my GP, although very nice, seems to know alarmingly little about coeliac disease generally. He has said to me that although the blood test came back positive that it's probably not all that accurate, especially with my other food allergies (which I didn't think would effect it). On the internet I find far more information about false negatives than false positives though.

Anyway, my GP referred me to a gastroenterologist but on seeing my blood test results that step has been bypassed by the hospital and they've put me straight in for the scary biopsy. The thing is, if it's so likely that they've done that then why is a biopsy necessary? While I wait I continue to eat gluten and therefore (probably) do further damage to myself!

I would be happy to try the gluten free diet to see if it helped without having the trauma of a biopsy. Maybe getting a second blood test might be an idea, also maybe checking for vitamin/nutrient absorption might be useful. The trouble is that as far as I can tell if I go down that route myself it seems that I won't get the back up of prescriptions for gluten-free food, dietician advice, checks for osteoporosis etc etc.

Can anyone offer any advice/suggestions? And sorry for this being such a long post!

mftnchn Explorer
mftnchn
Posted

Welcome to this forum! You have definitely found the right place for a lot of information and support.

I am sure others who have had a biopsy will respond further. I haven't had one, but I understand it is really not a big deal. It is via an endoscopy (which I have had) and was quite painless. I was asleep for the whole thing and it didn't last too long.

Perhaps if you don't need to wait too long, and the expense is okay (not sure the situation where you are, UK perhaps?) you could go ahead with it. If you have both positive blood and positive biopsy, this is the "golden standard" for diagnosis, at least in the USA, and no doctor will dispute it. For some people this seems to make it easier.

I did a stool test through Enterolab, which is not well known in the medical community (Dr. Fine hasn't published on his work)(; it was strongly positive. Since I am not in a place where I could easily get further tests and won't be until early in 2008, I went ahead with the diet. (I'm just 3 weeks into it). I did discuss this all by phone with my allergist who concurred that I needed to strictly avoid gluten and milk (casein). He said the ultimate "test" is the clinical response.

My best to you as you wrestle with this decision.

WHinNOVA Rookie
WHinNOVA
Posted

I'm three weeks ahead of you. Don't fret the biopsy. You don't feel a thing and there is no pain or discomfort at any point before, during or after.

I'm a huge chicken when it comes to this type of stuff and can honestly tell you that the worst part is the prick from the IV needle. Trust me you felt more pain and discomfort with the blood test and allergy work than you will with the endoscopy and biopsy. You'll take a 5 minute nap and it will all be over. Plus you'll get a day off from work!

In addition to the biopsy confirming / defirming the presence of celiac, the endoscopy process allows the doctor to see how much damage has been done inside your small intestine and look for symptoms of related problems (e.g., damage from acid reflux, stomach bacteria, etc.). Your doctor will be able to tell you what stage the disease has progressed to as a result of the biopsy and this will help tailor what you do later (e.g., need for nutriotional supplements, potential for temporary lactose intolerance, etc.).

The whole procedure is really very simple and this is your health we're talking about. Go get the endoscopy and biopsy. You'll be glad you did.

WH

Boffin Rookie
Boffin
Posted
  • Author

Thank you so much for the helpful and reassuring replies everyone. I do so much appreciate it as I've been getting quite frustrated with not having anyone who I could talk to or seek advice about this.

The information about the biopsy not being as scary as I've feared is definately just what I need as I have to admit to being a huge wuss over such things. Just the sign saying "hospital" is practically enough to produce a cold sweat!

It's also good to hear what information the biopsy provides and why it is important. The fact that it will show the stage of the disease is so logical but something that I'd not fully appreciated. As far as I was concerned, the only "treatment" that I knew of was gluten-free diet, but I can now see the value of seeing if supplements and further investigations are needed.

Thanks again everyone, and if you have any further information or advice I'd really appreciate it. I hope to have longer to reply to you all and to explore the forum further at some point but am unfortunately very busy at work today and with the boss lurking not very far away!

Best wishes to you all.

nora-n Rookie
nora-n
Posted

Here in Europe we get money after an official diagnosis of celiac (coeliac). This is one reason for the biopsy.

The other is to have something to compare with if you maybe (rarely) do not get much better.

And, the risks of tumorsis much greater in celiacs, so it is a good thing they check for those incase of persisting symptoms.

I did meed a woman in hospital with a cancer like that. She c had DH and was celiac and hypothyroid (on thyroxine) and she had an operation, allb ecaause of nonc-copliance or late diagnosis I think.

So it is a good thing to get diagnosed, and good follow-up.

(the nurses a tthe ward did not comment on that all her illnesses were connected..and this was the gastro ward.....)

nora

norway

Nancym Enthusiast
Nancym
Posted

I'd say go ahead and have the biopsy but even if it comes out negative try the diet. So many people find the diet clears up a lot of problems.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.