Do I Call Myself A Celiac?

[GlutenFree4Life]

Hello Everyone...I just joined today....and I guess I have a newbie question:

QUESTION:

In being tested for celiac, if my blood work came back elevated and my endoscopy showed "chronic inflammation" only --- do I refer to myself as having celiac? The nurse I spoke with said that chronic inflammation is a precursor to celiac - so I'm on the same road, apparently. My doctor said (before the endoscopy) that my first-degree relatives should be checked and that I should join a celiac support group. In short, does "chronic inflammation" and elevated blood work qualify me as saying I having celiac when people ask me or am I supposed to say that I'm wheat intolerant instead? I don't want to misrepresent myself - on the other hand I don't want to minimize what I have either...

I sure would appreciate some advice here...

Signed,

Searching for an Identity...

If you'd like any more information, this is what happened in a nutshell:

1. I had blood work for celiac which came back "elevated", per doctor's office.

2. I went gluten-free for 4-5 weeks and felt soooo much better.

3. I resumed eating gluten for 3 weeks prior to endoscopy (and started feeling awful again).

4. Had an endoscopy which showed "chronic inflammation" only.

[Lisa]

Hello Everyone...I just joined today....and I guess I have a newbie question:

QUESTION:

In being tested for celiac, if my blood work came back elevated and my endoscopy showed "chronic inflammation" only --- do I refer to myself as having celiac? The nurse I spoke with said that chronic inflammation is a precursor to celiac - so I'm on the same road, apparently. My doctor said (before the endoscopy) that my first-degree relatives should be checked and that I should join a celiac support group. In short, does "chronic inflammation" and elevated blood work qualify me as saying I having celiac when people ask me or am I supposed to say that I'm wheat intolerant instead? I don't want to misrepresent myself - on the other hand I don't want to minimize what I have either...

I sure would appreciate some advice here...

Signed,

Searching for an Identity...

If you'd like any more information, this is what happened in a nutshell:

1. I had blood work for celiac which came back "elevated", per doctor's office.

2. I went gluten-free for 4-5 weeks and felt soooo much better.

3. I resumed eating gluten for 3 weeks prior to endoscopy (and started feeling awful again).

4. Had an endoscopy which showed "chronic inflammation" only.

If your blood work was elevated outside of the normal ranges you DO have Celiac. Welcome to the Club. Positive dietary response is also a diagnosis. Welcome to the Club.

[ravenwoodglass]

I agree, if you have positive blood work you have celiac, although negative blood work does not mean you don't have it, positive blood work is diagnostic.

[Rpm999]

bloodwork pretty much confirms celiac, right? there's no false positives? because i had elevated bloodwork, but i want to know if that DEFINATELY confirms celiac

[Lisa]

bloodwork pretty much confirms celiac, right? there's no false positives? because i had elevated bloodwork, but i want to know if that DEFINATELY confirms celiac

Here is some good information:

https://www.celiac.com/articles/13/1/What-i...ests/Page1.html

[Crimson]

I'm curious about this too!

I went with the enterolab test. The gene test for now. I do not want to deal with actual doctors in this area.

I had one try to remove my gallbladder while another tells me it's working fine. I refused to let them take it!

I am certain that I am gluten intolerant. It makes me depressed and ill for days.

I don't even question malabsorption...you can't deny that issue.

I have many many of the signs and symptoms. Actually for as long as I can remember, I've had symptoms.

I've been gluten free for three months (I was wheat free for two years prior to this). I've done well with putting some weight back on and feeling much better. Liquid vitamins *gluten free of course* have been given most of the credit for that since I'm still having serious issues with absorption.

I've no idea if I should call myself celiac or not as well.

I should have my results by Friday.

If it comes back that I have the genes and the symptoms...with no actual doctor involved....

should I call myself Celiac?

Idk

[JustCan]

I actually have a similar situation. Negative bloodwork when I was already gluten free (uninformed doctor) and then a biopsy that showed "inflammation" after a 4 week gluten challenge (I was so sick!). My primary doc and GI both said I had all the symptoms of celiac but they couldn't diagnose it for sure. At first, I told people I was gluten intolerant since I didn't have a formal diagnosis but after the amazing response I've had to this diet, I now consider myself to have celiac disease.

[lizard00]

I had negative bloodwork after going gluten-free first... at first I thought there was no way I could have Celiac. It just wasn't that serious...

But now, as I get better and certain things that I never thought were gluten related have fixed themselves, and the more I learn about this disease, I am pretty sure that I have it. I consider myself to be an undiagnosed Celiac, although I even have my GP on board and she thinks that Celiac is a strong possibility. So, maybe a dx is even closer than I thought. But I understand that part about misrepresenting yourself. Most people know that I cannot tolerate gluten, and if they ask, I'll explain to them why I think it's Celiac rather than just a sensitivity. I can say that thus far, I haven't encountered anyone who questions that importance of me staying away from it. I live my life as though I have celiac because I am sure that I do. It is the only thing that makes sense.

[heavy]

Hi everyone,

I am very new to this myself and also a little confussed too. My daughter who is 6 was having problems with her stomach for about 6 months. We had been taking her to the Dr. and they put her on prevacid for acid reflux. that seemed to help a little but not much. 3 months later they did blood work and also an upper gi. when the results came back she had a little inflamtion and the biopsy was negitave for celiac disease. however they said she had the dna for this disease and put her on a gluten free diet.she has been on this diet for about 3 months now. the diet has help some but still has problems with her stomach and constapation. they told me it could turn into celiac disease later on in life.. my question is how is it much different? will the health problems be different and even the diet. no one explaned that to me. all i got was put her on this diet and sent me home. it was a month later before i got to talk to a nutritionist so everything i've learned has been on my own. i could use all the help i can get...

[jaten]

I think the best answer would come from your dr. or from authority in the field of Celiac.

Here is one place you may want to read.

Open Original Shared Link

This link takes you to the University of Chicago Celiac Disease Center. There are several pages of information, since your question asked about test results, this link takes you directly to "Testing." It explains the tests and what the results do or don't mean.

Whether you have Celiac or are gluten-intolerant, best of luck to you!

[mftnchn]

I now call myself celiac as well and so does my doctor.

I didn't have the blood work or a biopsy because I was overseas when I got my Enterolab results, see below. These results, plus dietary response, plus my highest risk for celiac (I have double copies of the celiac gene), plus a suspicious endoscopy that showed no "folds" in the duodenum that was done because of gastritis, have all led me to the firm conclusion of celiac. Also I have serious malabsorption issues.

It took me a year to decide that was a firm diagnosis however. The huge shifts and slow healing since going gluten-free has helped convince me, because it is clearly not just an allergy. I have obviously had much internal damage to recover from and it looks like it is going to be the full two years to see the healing take place.

You are not the only one with questions, but most doctors who are informed seem to take the positive blood test as diagnostic.

[GlutenFree4Life]

Many thanks to all of you who took the time to answer my questions - I sure do appreciate every response, now feeling that I have a MUCH better handle on things at this end...

The links to the University of Chicago Celiac Disease Center The University of Chicago - Celiac Disease Center - Testing showed page after page of truly useful information - thanks a million for that.

To Momma Goose who wrote, "If your blood work was elevated outside of the normal ranges you DO have Celiac. Welcome to the Club. Positive dietary response is also a diagnosis. Welcome to the Club." I can only respond with the immortal words of Grouch Marx, " I don't care to belong to a club that accepts people like me as members."

It's GREAT being in contact with all of you, I'm glad I've found this forum and VERY glad I've joined...

Thanks again very much to all of you...

[Lisa]

Many thanks to all of you who took the time to answer my questions - I sure do appreciate every response, now feeling that I have a MUCH better handle on things at this end...

The links to the University of Chicago Celiac Disease Center The University of Chicago - Celiac Disease Center - Testing showed page after page of truly useful information - thanks a million for that.

To Momma Goose who wrote, "If your blood work was elevated outside of the normal ranges you DO have Celiac. Welcome to the Club. Positive dietary response is also a diagnosis. Welcome to the Club." I can only respond with the immortal words of Grouch Marx, " I don't care to belong to a club that accepts people like me as members."

It's GREAT being in contact with all of you, I'm glad I've found this forum and VERY glad I've joined...

Thanks again very much to all of you...

This is a great place to be. I am glad you feel at home here.

[kayavara]

Hello Everyone...I just joined today....and I guess I have a newbie question:

QUESTION:

In being tested for celiac, if my blood work came back elevated and my endoscopy showed "chronic inflammation" only --- do I refer to myself as having celiac? The nurse I spoke with said that chronic inflammation is a precursor to celiac - so I'm on the same road, apparently. My doctor said (before the endoscopy) that my first-degree relatives should be checked and that I should join a celiac support group. In short, does "chronic inflammation" and elevated blood work qualify me as saying I having celiac when people ask me or am I supposed to say that I'm wheat intolerant instead? I don't want to misrepresent myself - on the other hand I don't want to minimize what I have either...

I sure would appreciate some advice here...

Signed,

Searching for an Identity...

If you'd like any more information, this is what happened in a nutshell:

1. I had blood work for celiac which came back "elevated", per doctor's office.

2. I went gluten-free for 4-5 weeks and felt soooo much better.

3. I resumed eating gluten for 3 weeks prior to endoscopy (and started feeling awful again).

4. Had an endoscopy which showed "chronic inflammation" only.

I still feel as I am searching for an identity at times.I had negative bloodwork and biopsy with "gastric mucosal abnormalities by erythema".Doctor says he feels like it is Celiac in an early stage.I've had WONDERFUL support here for the last few weeks confirming that dx. I do call myself a Celiac because I feel so much better after going gluten free....I am a new person.

I do have a question regarding CC. I have 5 people (non celiac as for as we know) to cook meals for everyday and while I am extremely careful...I know there has been times when I have been accidently gluten.I never get sick or experience severe stomach issues. I have had an episode or two of bloating though. Is it because Doc thinks he caught this thing in it's earliest stage? My symptoms were never like so many of you here....they were mostly bloating,distented stomach,lots of gas,dry itchy skin,joint pain,depression and more. I was definetly miserable but not as bad as many of you.....so would being glutened follow the same path as far as moderate symptoms? Maybe it is affecting me without symptoms. Am I just one of the luckier ones?

Just Wondering

Kay

[lapentola]

I wonder if I can call myself a celiac too. I'm afraid to join a support group without a diagnoses, but my husband does not want me to be tested before we get insurance. Does anyone know if I was tested through entrolab and then tried to get insurance if the insurance company would be able to find out that I have this pre-existing condition? Would it matter since celiac disease does not require medication? How important do you think it is to have the documentation? Are there benifits to not having the documentation? Also, one of my daughters seems to have it as well. As a child would it be important for her to have that documentation?

I'm 95% sure I have it. For as long as I can remember I have been teetering on the edge of anemia (very pale, dark circles under eyes, dull eyes, bouts of vertigo, unable to donate blood), I've had joint pain all my life, despite good oral hygeine I always have multiple cavites, I had a bone scan at the age of 26 and was diagnosed with osteopenia, I thought I had IBS, and when I would over-do-it on the wheat products I would turn red and splotchy all over and end up in bed with a migraine. I have been like this for as long as I can remember, and I'm somewhat relieved to find out that all these things could be related. Oh, and I'm of Italian and Irish descent.

I've been off of gluten for approx two weeks and for the first time in my life (without having a sunburn) I have pink cheeks! You can actually tell that my eyes are hazel! It looks like they are backlit or somthing, and my racoon eyes are gone. (I can't stop looking in the mirror ) The IbS symtoms have hit the road too. And my skin has changed texture, like I have lotion on or somthing!

I'm sorry this is so long, I just had to get this out. Any help you can give me with my questions would be greatly appreciated!!!

debbie

[MDRB]

Hi,

I have been diagnosed with celiac disease. When I go to a new doctor I tell him/her that I have celiac disease but if I'm just talking to someone, refusing food they offer me or something I usually just say that I am gluten intolerant otherwise I get that look like 'OMG you have a disease?!'

I guess it depends on how knowledgeable the other person is.

lol

[grommet]

I know that we all want a proper diagnosis so that we can confirm we are not going mad, but surely this is not just about what we call ourselves and whether we can join a forum.

Having a Gold diagnosis of Coeliac within the UK means (possibly) follow up appointments with a nutritionist, follow up bone scans, follow-up vitamin injections, other members of the family getting tested, follow-up bone scans, assistance with prescription gluten-free food, assistance with fertility problems, a follow up biopsy to see if the gluten free diet is working, a Dr's note if you visit hospital and need a gluten-free diet, a Dr's note if you require extra baggage allowance when going on holiday, cover by the Disability Laws if time needed off work etc etc etc.

None of this is available if you are self diagnosed or just diagnosed as gluten intolerant.

What does a gold standard diagnosis mean in the US? Do you get any extra health checks? Or are you just an insurance liability?

[Crimson]

Hah!

B: You're an insurance liability.

Thanks, I needed the laugh.

[lapentola]

My problem is that I'm teetering on the edge of my desire to know that I am not going mad, and my desire to not become uninsurable. I fear that with the diagnoses of celiac my related conditions like osteopenia would not be covered by insurance because it would be a pre-exsisting condition. It is very scary, so I don't dare go to a doctor! I know it sounds foolish, but I will not be able to afford treatment in the future without the help of insurance, and if an insurance company in the US finds out that you have a pre-exsisting condition you become a liability. I can't even convince anyone in my family who has insurance to get tested.

Also, I would like to know to know what to call myself. I have always been very shy and afraid of joining any type of group, and having some sort of confirmation, from someone other than myself, would mean the world to me. I just do not feel comfortable... anywhere normally, and I especially don't feel comfortable among a group of people who know they belong. I lack the confidence of knowing that I belong, because what if it is just all in my head? (Yes, I have major self confidence issues)

I really hope that we achieve universal healthcare in the US.

[grommet]

My problem is that I'm teetering on the edge of my desire to know that I am not going mad, and my desire to not become uninsurable.

sorry - I didn't mean to get at you personally. I hope it didn't come across like that. I was really trying to understand what a diagnosis (or not) means in the US.

I'm sure you are very welcome on this group and will get lots of good advice.

[redgf]

I wonder if I can call myself a celiac too. I'm afraid to join a support group without a diagnoses, but my husband does not want me to be tested before we get insurance. Does anyone know if I was tested through entrolab and then tried to get insurance if the insurance company would be able to find out that I have this pre-existing condition? Would it matter since celiac disease does not require medication? How important do you think it is to have the documentation? Are there benifits to not having the documentation? Also, one of my daughters seems to have it as well. As a child would it be important for her to have that documentation?

I'm 95% sure I have it. For as long as I can remember I have been teetering on the edge of anemia (very pale, dark circles under eyes, dull eyes, bouts of vertigo, unable to donate blood), I've had joint pain all my life, despite good oral hygeine I always have multiple cavites, I had a bone scan at the age of 26 and was diagnosed with osteopenia, I thought I had IBS, and when I would over-do-it on the wheat products I would turn red and splotchy all over and end up in bed with a migraine. I have been like this for as long as I can remember, and I'm somewhat relieved to find out that all these things could be related. Oh, and I'm of Italian and Irish descent.

I've been off of gluten for approx two weeks and for the first time in my life (without having a sunburn) I have pink cheeks! You can actually tell that my eyes are hazel! It looks like they are backlit or somthing, and my racoon eyes are gone. (I can't stop looking in the mirror ) The IbS symtoms have hit the road too. And my skin has changed texture, like I have lotion on or somthing!

I'm sorry this is so long, I just had to get this out. Any help you can give me with my questions would be greatly appreciated!!!

debbie

I experienced the same things you did, the brighter eyes, smoother skin, my acne went away, no IBS issues, and after two months of eating gluten free I for the first time in seven years weighed over 100 lbs! I have been gluten free for two years now, and am perfectly healthy and "normal" now!

My new insurance company did not consider celiac disease as a pre-existing condition, both my previous and current ins. co's actually told me it's not even a "condition", it's simply an allergy! I can only speak from experience, but I wouldn't worry about the actual celiac being an issue. However, if it has caused other issues, they may be considered pre-existing.

I would definitely recommend getting your daughter to a gastroenterologist(sorry, spelling!) to be tested, some kids with celiac disease don't grow or physically mature properly due to the mal absorption issues...

Hope that helped!

[lapentola]

sorry - I didn't mean to get at you personally. I hope it didn't come across like that. I was really trying to understand what a diagnosis (or not) means in the US.

It didn't come out wrong and I took no offence, I was just trying to elaborate on my situation.

I might just be paranoid after watching "Sicko" by Michael Moore but it really does seem like our medical services are backward in this country. The only way to insure that you can get good healthcare is not to get sick. It sounds like you are offered great preventative and follow up care which is really wonderful! (I'm jealous) I would also recommend watching Michael Moore's film I found it compelling and perhaphs it could give you some insite on our healthcare system. (If you're interested)

Thank you for the information grommet! It's good to know that celiac might be a non-issue. The osteopenia might be difficult to get around, but hopefully I'll be able to start turning that around on the gluten-free diet. As for my daughter, she is also without insurance right now, but as soon as we get it I'll have her tested. She doesn't want to do a blood draw though, and I was wondering how useful the mouth swab and fecal tests are?

Thanks!

[curlyfries]

Hi lapentola!

I don't really have anything to contribute. I am self-diagnosed. Because of the bleeding I used to have, I know there must be intestinal damage.

I actually just wanted to say welcome neighbor! What side of Indy are you from? I live on the far east side.

Lisa

[grommet]

Thank you for the information grommet! It's good to know that celiac might be a non-issue. The osteopenia might be difficult to get around, but hopefully I'll be able to start turning that around on the gluten-free diet. As for my daughter, she is also without insurance right now, but as soon as we get it I'll have her tested. She doesn't want to do a blood draw though, and I was wondering how useful the mouth swab and fecal tests are?

Thanks!

I'm without a diagnosis by the way ( I have had negative bloods (when gluten-free) and negative biopsy(7 weeks eating gluten after 2 years gluten-free).

But, I have a terrible reaction (apart from the obivous gastro symptoms) when I eat gluten: joint pain, fatigue, anxiety, palpitations, twitchy legs, night sweats some of this seems to be an autoimmune reaction along with neurological symptoms rather than just gastro problems. I'm sure there are malabsorption issues also. I have suffered with migraines for many years and have had multiple miscarriages. It also affect my mum and daughter so there seems to be something genetic/hereditary there.

But in spite of all that I'm not coeliac, and I have no diagnosis. Thankfully I have no other auto-immune diseases and neither have other members of my family. So the self-diagnosis is non-coeliac gluten sensitivity.

So I don't have the advantage of the follows ups associated with celiac disease in the UK.

I'm afraid I don't know about mouth swabs and fecal tests. My next step is possible Halotyping. A poster on the mainly UK based forum has said the following re not getting a coeliac diagnosis:

The haplotyping is a good idea. It may be that the only diagnosis you can get is Non-coeliac gluten sensitivity. It's not ideal but it's better than the label IBS. NCGS may or may not be part of the coeliac spectrum (many people think that in DQ2 pos. individuals this is likely) but this idea is so new and much more proper research into the connection is needed before it is realistic to expect a clinical confirmation (especially when there are 500 000 undiagnosed classic coeliacs in the UK to worry about first).

If your haplotype and ticking of symptoms do suggest a lifelong sensitivity to gluten, and your health and eg iron levels/weight improve on the diet, your consultant/GP may be prepared to treat you. You may not get prescriptions but you may able to get annual monitoring. Ask about this. Depending on your age and medical history you might also want to consider a bone scan (which you may have to pay for).

Incidentally there are good websites on gluten sensitivity by Dr Scott Lewey (The Food Doc) and Dr Rodney Ford (Dr Gluten) which would give you a lot of information and put you in touch with many other people diagnosed with non-coeliac gluten sensitivity ( It is quite clear that many people with NCGS are much iller and react more to gluten than many diagnose coeliacs):

Open Original Shared Link

Open Original Shared Link "

Which I think is well put and sums things up nicely.

[linuxprincess]

My underlying theory on this whole topic is this: If you go gluten-free for X amount of time and you feel like doing cartwheels, or your variation thereof, then when you go back to the dark side you feel badly. Wouldn't it just make sense not to eat it and call an end to it? That goes for all things not just gluten. My mother has horrible reactions to that pepper stuff at pizza parlors, but not anything else hot, so she just stays away from that. It works. I've never had an official diagnosis done, and have known several others who do not have one, and we seem to function okay without it. My internal symptoms improved with no wheat, but this cursed DH is hanging on for fun I suppose.