Positive Or Negative ?

[blue angel]

Hi people, well just had my scope done 2 weeks ago and so far no indication of celiac disease. Problem though, i didn't tolerate it too well and they only got 2 biopsies, needed 6 . Anyway called them yesterday and said still looking at it.

After my scope they told me i may need another if it comes back inconclusive. My Ttg was pos all symptoms pos and recently tingling in fingers ??. One thing though can anyone help me with, If my biopsy is neg and blood pos plus symptoms will my doc put me on a gluten-free diet to see if it helps? and also if he does will i get a diagnosis cause i'm tearing out my hair at the moment

[ravenwoodglass]

Hi people, well just had my scope done 2 weeks ago and so far no indication of celiac disease. Problem though, i didn't tolerate it too well and they only got 2 biopsies, needed 6 . Anyway called them yesterday and said still looking at it.

After my scope they told me i may need another if it comes back inconclusive. My Ttg was pos all symptoms pos and recently tingling in fingers ??. One thing though can anyone help me with, If my biopsy is neg and blood pos plus symptoms will my doc put me on a gluten-free diet to see if it helps? and also if he does will i get a diagnosis cause i'm tearing out my hair at the moment

If your TTg was positive you need to be gluten free regardless of the results of the biopsy. Have you tried the diet yet? Many times the wrong place is biopsied or the results will show changes that are typical of celiac but many clueless GI will want you to keep eating gluten until the villi are completely destroyed before they will 'officially' diagnose you. Celiac is most likely the only disease that doctors will demand you go into the final most damageing phase before diagnosis. You are symptomatic and you were lucky and had this show up in blood work, whether this is just 'gluten intolerance' or full blown celiac is a moot point IMHO. You do not need your doctors permission to go on the diet and some find that the official diagnosis leads to trouble getting insurance down the line. The choice whether to continue on your downward slide and possibly end up with problems that have gone past the point of remission just to satisfy your doctors is yours.

[Gemini]

Excellent advice, Ravenwoodglass! My blood work was so high on all counts, my "good", non-HMO doctor told me the biopsy was not necessary. I was also extremely ill with classical presentation. I could not believe the HMO dummies wanted me to wait for an appointment for a biopsy when I was near hospitalization from being so sick. I went gluten free and have never looked back. Any doctor that questions my diagnosis, I also remind them of the 2 other autoimmune diseases I have, on top of celiac disease, that I may not have gotten had they been on the ball in the first place.

Symptoms and positive blood work ARE a diagnosis....the doctors just want to make more money with the scope test at a patient's expense. What a bunch of dopes!

[dadoffiveboys]

I had equivocal blood results on only ONE test - negative biopsies.. and I had like 8 in the intestines, 6 in the stomach and 4 in the esophagus. I got a diagnosis of Gastritis and GERD - but when I went gluten-free all my symptoms - GERD, Asthma, Reflux, Uticaria, Neuropathy - disappeared- how can this be?

Btw - my only high test was for IgA Gliadin. My TTG was 'normal' at the highest range possible. My 2 1/2 yr old son (now 3) had failure to thrive and 'normal' blood results - he no longer has failure to thrive going gluten-free and gained 5 lbs since Feb 2007 (went from 25lbs to 30lbs!!). All four of my boys have it, and got off medicines and none have a diagnosis. As a side note - my dad who went undiagnosed (and btw the doctors REFUSED to test him) is now off all reflux and blood pressure medicine which his doctors vehemently refuse they were wrong but can't explain HOW that's possible. Unfortunately, he still has his 60% kidney failure from YEARS of improper diagnoses. If you have a positive TTG - that is a BIG indicator your system is on the verge of collapse and I highly recommend you IMMEDIATELY go gluten-free - do not stay on gluten just for the doctors to get more medical notes. I only wish I could have gotten blood test results for my father so I'd know how much the medical doctors don't know about this disease.

[blue angel]

I had equivocal blood results on only ONE test - negative biopsies.. and I had like 8 in the intestines, 6 in the stomach and 4 in the esophagus. I got a diagnosis of Gastritis and GERD - but when I went gluten-free all my symptoms - GERD, Asthma, Reflux, Uticaria, Neuropathy - disappeared- how can this be?

Btw - my only high test was for IgA Gliadin. My TTG was 'normal' at the highest range possible. My 2 1/2 yr old son (now 3) had failure to thrive and 'normal' blood results - he no longer has failure to thrive going gluten-free and gained 5 lbs since Feb 2007 (went from 25lbs to 30lbs!!). All four of my boys have it, and got off medicines and none have a diagnosis. As a side note - my dad who went undiagnosed (and btw the doctors REFUSED to test him) is now off all reflux and blood pressure medicine which his doctors vehemently refuse they were wrong but can't explain HOW that's possible. Unfortunately, he still has his 60% kidney failure from YEARS of improper diagnoses. If you have a positive TTG - that is a BIG indicator your system is on the verge of collapse and I highly recommend you IMMEDIATELY go gluten-free - do not stay on gluten just for the doctors to get more medical notes. I only wish I could have gotten blood test results for my father so I'd know how much the medical doctors don't know about this disease.

Hi all, thanks for that advice my findings on endo was oesophagitis grade 1 and gastritis moderate antral? could this be caused by the gluten monster too.

My symptoms i forgot to mention are

abdo totally swollen ( can't wear normal jeans etc 2 sizes bigger)

pain in joints especially neck shoulders and on a morning ankles sieze up

V occasional diarroeh but mainly hard but frequent

pain in abdo worse after bread, biscuits etc

tingly feeling in hands and fingers

moody irritable ( or maybe that's just frustration wanting it all sorted)

gas

gums bleed recently Help!!

are these sounding like celiac disease?

[dadoffiveboys]

Hi all, thanks for that advice my findings on endo was oesophagitis grade 1 and gastritis moderate antral? could this be caused by the gluten monster too.

My symptoms i forgot to mention are

abdo totally swollen ( can't wear normal jeans etc 2 sizes bigger)

pain in joints especially neck shoulders and on a morning ankles sieze up

V occasional diarroeh but mainly hard but frequent

pain in abdo worse after bread, biscuits etc

tingly feeling in hands and fingers

moody irritable ( or maybe that's just frustration wanting it all sorted)

gas

gums bleed recently Help!!

are these sounding like celiac disease?

I had gastritis and GERD (basically what you said).

I do get joint pain - I had diarreah mixed with constipation. I sometimes had pain in abdomen and the tingly feeling is neuropathy... moody/iritable is a form of ADHD possibly - gas and gum bleeding are signs... I would guess you are a DQ1 (not 'celiac') because it's milder but definitely gluten intolerant IF the diet helps you... it could also be Casein - or BOTH (I HOPE NOT!!)

BTW.. it takes a considerable amount of time gluten-free to remove some of those symptoms.. especially the tingly stuff. My pain was also worse when eating MILK products - but only if I had gluten. When I don't have gluten I don't have the gas - probably my lactase enzyme building back up..

[ravenwoodglass]

Hi all, thanks for that advice my findings on endo was oesophagitis grade 1 and gastritis moderate antral? could this be caused by the gluten monster too.

My symptoms i forgot to mention are

abdo totally swollen ( can't wear normal jeans etc 2 sizes bigger)

pain in joints especially neck shoulders and on a morning ankles sieze up

V occasional diarroeh but mainly hard but frequent

pain in abdo worse after bread, biscuits etc

tingly feeling in hands and fingers

moody irritable ( or maybe that's just frustration wanting it all sorted)

gas

gums bleed recently Help!!

are these sounding like celiac disease?

Your endo findings were typical for changes related to celiac. Your symptoms also highly suggest it. In addition to going gluten free you need to get a good sublingual, that parts real important, B12 supplement. Do not get one that does not say free of gluten, but most will. Your nervous system is being impacted, that is the reason for the tingly feelings and most likely plays a big part in your moods. Read as much as you can here, eat as pure and unprocessed naturally gluten free as you can to start, that will make cross contamination less of an issue and aid in healing. Ask any questions you need to about anything, no query is too 'out there'. I do hope you will give the diet a strict and serious try for at least a couple months. You may find your a different person both in health and mood.

[dadoffiveboys]

Your endo findings were typical for changes related to celiac. Your symptoms also highly suggest it. In addition to going gluten free you need to get a good sublingual, that parts real important, B12 supplement. Do not get one that does not say free of gluten, but most will. Your nervous system is being impacted, that is the reason for the tingly feelings and most likely plays a big part in your moods. Read as much as you can here, eat as pure and unprocessed naturally gluten free as you can to start, that will make cross contamination less of an issue and aid in healing. Ask any questions you need to about anything, no query is too 'out there'. I do hope you will give the diet a strict and serious try for at least a couple months. You may find your a different person both in health and mood.

This makes me think.. my family has a history of "pernicious anemia" (so I was told).. this is Vitamin B12 deficiency then.. Do you think I ought to see my doctor for B vitamin supplements? Do you think that is causing my son to have his frequent nosebleeds or my other child's low appetite?

Just curious since you seem to know about this some! thanks!

[Gemini]

This makes me think.. my family has a history of "pernicious anemia" (so I was told).. this is Vitamin B12 deficiency then.. Do you think I ought to see my doctor for B vitamin supplements? Do you think that is causing my son to have his frequent nosebleeds or my other child's low appetite?

Just curious since you seem to know about this some! thanks!

A history of Vitamin B-12 deficiency is a warning bell that a malabsorption problem could be the root cause. Vitamin B-12 is found mainly in animal products like dairy and meat.....it is not made within the body itself, just stored there. It is also used very slowly so you would have to be either not eating at all or have a malabsorption issue to become deficient in it. You do not need to go to a physician to buy good B-12 supplements....just make sure they are sublingual tablets and gluten free. You want to by-pass the gut until it heals and by placing it right under the tongue, it goes to the bloodstream.

The nosebleeds may be a Vitamin K deficiency as K helps to clot blood. A good doctor will do vitamin levels to see if this is the case. Don't go taking large doses on your own as it may cause a clotting problem. I have found from personal experience that Celiac can cause some pretty weird symptoms, ones you would never think are associated with celiac disease. It's amazing to follow the diet and see problems disappear like magic just by dumping the gluten out of your diet. It's also fun when doctors give you a weird look over the stranger symptoms and their disappearance....they really don't "get" it at all. Learn to trust yourself and what happens with your body.....you live there so only you will know for sure.

[blue angel]

A history of Vitamin B-12 deficiency is a warning bell that a malabsorption problem could be the root cause. Vitamin B-12 is found mainly in animal products like dairy and meat.....it is not made within the body itself, just stored there. It is also used very slowly so you would have to be either not eating at all or have a malabsorption issue to become deficient in it. You do not need to go to a physician to buy good B-12 supplements....just make sure they are sublingual tablets and gluten free. You want to by-pass the gut until it heals and by placing it right under the tongue, it goes to the bloodstream.

The nosebleeds may be a Vitamin K deficiency as K helps to clot blood. A good doctor will do vitamin levels to see if this is the case. Don't go taking large doses on your own as it may cause a clotting problem. I have found from personal experience that Celiac can cause some pretty weird symptoms, ones you would never think are associated with celiac disease. It's amazing to follow the diet and see problems disappear like magic just by dumping the gluten out of your diet. It's also fun when doctors give you a weird look over the stranger symptoms and their disappearance....they really don't "get" it at all. Learn to trust yourself and what happens with your body.....you live there so only you will know for sure.

Hi gain, it's really great to share this with people alike It is so unpredictable from day to day. I will wait for full biopsy results and hope it wont be redone due to lack of tissue samples. Then when i see my doc i will ask him to put me on gluten-free diet to see if symptoms improve.I just don't want to label myself celiac if biopsy is neg i feel like a fraud almost. I much prefer a diagnosis and i hope that doc will give me one, one way or another thanks all ~keep you posted ps forgot to mention the malabsorbtion test came back at 14 don't know what that means really

[Gemini]

Hi gain, it's really great to share this with people alike It is so unpredictable from day to day. I will wait for full biopsy results and hope it wont be redone due to lack of tissue samples. Then when i see my doc i will ask him to put me on gluten-free diet to see if symptoms improve.I just don't want to label myself celiac if biopsy is neg i feel like a fraud almost. I much prefer a diagnosis and i hope that doc will give me one, one way or another thanks all ~keep you posted ps forgot to mention the malabsorbtion test came back at 14 don't know what that means really

I can fully understand why you have a need for an "official" diagnosis, however, a negative biopsy does not mean you do not have Celiac! If there is not enough villi damage done yet, and everyone is different on this, then the doc will proclaim you do not have celiac disease and tell you to keep eating gluten. This is where common sense has to come into the picture. You should never feel like a fraud when your blood results are positive and you have flaming symptoms! The "gold standard" of diagnosis is defined that way because most doctors today need to SEE it on an x-ray or slide before they give it the AMA blessing. Not all patients fit that profile.

If there is a question on the results, just try the diet, as others have stated here. You have to be diligent about it and not cheat or you'll never be sure. Don't ask the doctor about it or he/she may discourage you from doing so. Honestly, they can be very clueless. The diet is not as hard as you may think....I eat just about everyhting a gluten eater does except I use different grains. I crave nothing I used to eat.

The difference in my health has been astounding.

Good luck to you and keep us posted. We are here to help!

[dadoffiveboys]

As a note to what Gemini said.. I have symptoms similar to yours.. I had multiple biopsies and I had NEGATIVE results - blood test and biopsy. However, I definitely have a gluten intolerance/allergy! Insurance wise, if you have celiac it DOES affect your rates (increasing them!) - so no official diagnosis is sometimes a very good thing - and I am not going to pursue getting it. Most GOOD doctors will give you an official diagnosis if you improve on a strict gluten-free diet. We changed our pediatrician for our children because the old one would not give a diagnosis w/o positive biopsy. The 'real GOLD' standard is when you feel better and have lack of symptoms - not a positive biopsy.... sometimes I think doctors are missing the boat!

I wonder if I could ever afford insurance if I had the celiac label added on to my heart disease (I also wonder whether the two are related...??)

Either way.. do what makes yourself feel better and ignore jeers. If you don't get an 'official' diagnosis and feel better - tell everyone you have celiac because you do .. and only you can know if you have it or not!

[blue angel]

As a note to what Gemini said.. I have symptoms similar to yours.. I had multiple biopsies and I had NEGATIVE results - blood test and biopsy. However, I definitely have a gluten intolerance/allergy! Insurance wise, if you have celiac it DOES affect your rates (increasing them!) - so no official diagnosis is sometimes a very good thing - and I am not going to pursue getting it. Most GOOD doctors will give you an official diagnosis if you improve on a strict gluten-free diet. We changed our pediatrician for our children because the old one would not give a diagnosis w/o positive biopsy. The 'real GOLD' standard is when you feel better and have lack of symptoms - not a positive biopsy.... sometimes I think doctors are missing the boat!

I wonder if I could ever afford insurance if I had the celiac label added on to my heart disease (I also wonder whether the two are related...??)

Either way.. do what makes yourself feel better and ignore jeers. If you don't get an 'official' diagnosis and feel better - tell everyone you have celiac because you do .. and only you can know if you have it or not!

[blue angel]

Ta folks you're all angels i will keep you posted

[blue angel]

Hi people, well still no results . I just wanted to ask a couple of questions really. Recently when i eat bread, gluten foods i get a raised itchy rash on my left buttock and sometimes just above my eyebrow. Accompanied with my other symptoms ( see messages above) is this something to do with celiac disease. Also when they found gastritis and oesophagitis could this be what they needed to see to confirm it ??? i'm hanging in there but feeling quite ill at moment.

[confused]

Hi people, well still no results . I just wanted to ask a couple of questions really. Recently when i eat bread, gluten foods i get a raised itchy rash on my left buttock and sometimes just above my eyebrow. Accompanied with my other symptoms ( see messages above) is this something to do with celiac disease. Also when they found gastritis and oesophagitis could this be what they needed to see to confirm it ??? i'm hanging in there but feeling quite ill at moment.

Sounds like you have DH, which means you do have celiac. If you want to conifrm it is DH then the best bet is for them to biopsy by the rash. Since your blood work was positive and you are now getting an rash i would stop eating gluten right now.

paula

[Renee Wilder]

Hi everyone, I'm still in the land of shock, (not quite denial). Just got my blood tests back, all positive, anemic, B12 deficient, severe casein allergies etc.... Dr says we can do a biopsy, I paid for the tests out of pocket so insurance wouldn't find out. Should I go ahead and do the biopsy? Other than telling me how bad is what's the point? So far have been gluten free for 2 days, I definitely feel better. My allergies are much better. But I didn't know it would be so hard. Went to TCBY for frozen yogurt, it has whey protein! Left there crying. Got a big trip to Italy in November and I don't even want to go.

What is the best way to tell people say when you're eating out with friends that this really is a zero tolerance policy? So far everyone is comparing it to going on Atkins! Thanks for your help, I feel a bit lost at sea here.

[blue angel]

Sounds like you have DH, which means you do have celiac. If you want to conifrm it is DH then the best bet is for them to biopsy by the rash. Since your blood work was positive and you are now getting an rash i would stop eating gluten right now.

paula

Thanks for the reply Paula. I know what you are saying but the problem is the scope i had may need repeating so i have to carry on eating as normal. I am definately sure that i have issues with gluten now but the ttg was positive but the biopsy is looking different ( still waiting for the results). I have classic symptoms as you will see from my previous posts and getting more and more sick. If i go gluten-free now it may give a false result, i guess i just have to stick it out.