Can You Make Sense Of This?

[Mark65]

I'm new here but have been reading for a few days after having some confusing blood work.

I'll save my very long story for later but suffice it to say that I seemingly fit the "profile" and if I have celiac disease it might answer many, many things that have gone haywire in my life the last few years and even back 10 years or more.

I took a celiac panel, amongst other tests, to figure out some digestive related issues: pain, bm changes, tenderness, etc.

My doctor's office called 3 weeks ago and said that my results were "partially positive" and indicated at least a gluten intolerance and advised me to immediately go on a gluten free diet.

I started reading about celiac disease and went to get my lab results so that I could compare the results to the things I read about sensitivity, specificity, etc.

My report was kinda screwed up - like their printer was bad or something and it was confusing too. At the end I've included exactly what it says so maybe some of you can help me decipher it.

Yesterday I went to another doctor (was seeing a PA at first) in the same practice (because I'm a "complex case"). He diagnosed me with gluten intolerance but said that he didn't believe I had celiac disease. He advised going on a gluten free diet and if things don't change then in a month he'd do the biopsy. If the biopsy was positive I'd need to get "serious" about gluten free and go see the dietician, etc. By my reading I know a biopsy probably would be negative after a month plus of gluten free.

Typical case of doctor doesn't know best, right. Well the crazy thing is that on his laptop it only showed one positive but on my copy of the report I got last week it showed 2 positive. Well let me clarify - at the top it showed one thing positive and in the comment field it showed 2 things positive.

My translation of the top EMA negative (not the IGG) is that was the florescent test since there is no range but the EMA positive in the comment box was the automated blood test since it had a number. Does this make sense? Also in the comment box there is something mentioned that is negative with a range of 0-9 but in the report there is only one thing that has the range of 0-9.

Thanks for any help or ideas in matching this up because the doc surely wasn't much help.

Mark

PS Weirdness below is exactly what the paper says not my mispellings or whatever.

*****************

Report:

Antigliadin ABS, IGA		 1		   U/ML		  0-4

T-Transglutaminase (TT	1						   U/ML		  0-3

T-Transglutaminase (TT	1			   U/ML		  0-5

Endomysial Antibody IG	Negative					Negative

Immunoglobulin A, QN, S		  176						   MG/DL				   70-400

Antigliadin ABS, IGG		 27 (H)		U/ML		  0-9

Comment Box:

Negative 0-4

Negative 0-9

Negative 0-3

Positive >10 As the Endomysial Antigen. Studies have demonstr-

Positive >9

Negative 0-5

[AmandaD]

Mark - My doc at my hospital only relies on the TTG - she said that is the most specific you can possibly get for Celiac. She said the other antibodies are too confusing and can mean other things.

It looks like your TTG was well within normal.

I'm new here but have been reading for a few days after having some confusing blood work.

I'll save my very long story for later but suffice it to say that I seemingly fit the "profile" and if I have celiac disease it might answer many, many things that have gone haywire in my life the last few years and even back 10 years or more.

I took a celiac panel, amongst other tests, to figure out some digestive related issues: pain, bm changes, tenderness, etc.

My doctor's office called 3 weeks ago and said that my results were "partially positive" and indicated at least a gluten intolerance and advised me to immediately go on a gluten free diet.

I started reading about celiac disease and went to get my lab results so that I could compare the results to the things I read about sensitivity, specificity, etc.

My report was kinda screwed up - like their printer was bad or something and it was confusing too. At the end I've included exactly what it says so maybe some of you can help me decipher it.

Yesterday I went to another doctor (was seeing a PA at first) in the same practice (because I'm a "complex case"). He diagnosed me with gluten intolerance but said that he didn't believe I had celiac disease. He advised going on a gluten free diet and if things don't change then in a month he'd do the biopsy. If the biopsy was positive I'd need to get "serious" about gluten free and go see the dietician, etc. By my reading I know a biopsy probably would be negative after a month plus of gluten free.

Typical case of doctor doesn't know best, right. Well the crazy thing is that on his laptop it only showed one positive but on my copy of the report I got last week it showed 2 positive. Well let me clarify - at the top it showed one thing positive and in the comment field it showed 2 things positive.

My translation of the top EMA negative (not the IGG) is that was the florescent test since there is no range but the EMA positive in the comment box was the automated blood test since it had a number. Does this make sense? Also in the comment box there is something mentioned that is negative with a range of 0-9 but in the report there is only one thing that has the range of 0-9.

Thanks for any help or ideas in matching this up because the doc surely wasn't much help.

Mark

PS Weirdness below is exactly what the paper says not my mispellings or whatever.

*****************

Report:

Antigliadin ABS, IGA		 1		   U/ML		  0-4

T-Transglutaminase (TT	1						   U/ML		  0-3

T-Transglutaminase (TT	1			   U/ML		  0-5

Endomysial Antibody IG	Negative					Negative

Immunoglobulin A, QN, S		  176						   MG/DL				   70-400

Antigliadin ABS, IGG		 27 (H)		U/ML		  0-9

Comment Box:

Negative 0-4

Negative 0-9

Negative 0-3

Positive >10 As the Endomysial Antigen. Studies have demonstr-

Positive >9

Negative 0-5

[VydorScope]

Do the gluten-free diet, get serious about it now. If you get better, that is diagnostic of at least Gluten Intorlence. The only diference to get to celiac disease is you need enough damage done to show up in the biospy, but the treatment is the same. gluten-free for life.

Try it for a month. If you get better (progressively, will take time!!), then your done. If you dont, then prehaps more testing is needed.

[Becky6]

I would not worry about it. I declined the biopsy and have not felt so good in over 10 years since going gluten-free! To me, I don't care if I have a dx. I just wanted to feel better. I hope things get better for you!

[nettiebeads]

I agree with Vydorscope. Go gluten-free, if you feel better, then you have a problem with gluten. Simple as that. Your body knows best, listen to it. Besides, the diet challenge is a valid dx tool.

Keep us posted on your progress!

Annette

[Guest nini]

the most valid diagnostic tool is how your body responds to the diet. There are too many stories of Dr.s not knowing what they are talking about when it comes to this, and too many false negatives with testing. If you have symptoms, what have you got to lose by trying the diet? If it works, you have your answer. If it doesn't work, look into other food intolerances as well. You do not need a Dr.s permission to go gluten-free, and you don't really want a dx of Celiac on your permanent record anyway. Yes, I have been denied insurance coverage because of Celiac as a pre existing condition.

[Mark65]

Thanks for all the responses.

I attended the local celiac/gluten intolerance support group last night with my wife and their responses were mostly along the same lines as all of yours.

One woman pointed out that one reason to have a definite diagnosis is for that day in the future when you start thinking - well maybe it's not a celiac/gluten problem after all. Maybe it is the MS (part of my still untold story), maybe it's psychological, maybe I'm a hypochondriac, etc. Let me just try pizza/doughnuts/birthday cake or whatever.

Then you start a cycle of silent symptoms again (most of my most important ones are the atypical ones like joint pain, weakness, fatigue, not getting over colds or infections, etc.) even though lately I'm having digestive related which brought me to this point in the first place (reflux out of control, stomach pain, very smelly flatulence, "fluffy/floaty" BMs when I eat a lot of bread, etc.)

So her point was that to know is better than not to know.

My wife and I discussed it and our hearts say it's the gluten. I did really good (digestive symptoms wise) when I was first told to go gluten free 3-4 weeks ago. Then we ate pizza and a lot of the digestive things came back. I went back gluten free and then we cheated again with the same results.

So my heart thinks, hopes that many of the things that have ruined my life (losing best job of my life, losing my confidence/self esteem due to all the problems, the doctor to doctor to doctor routine) the last 3-15 years could be resolved by just going off gluten. No surgeries, no more being sick just about ALL the time, no more muscle weakness, fatigue, etc.

But then my mind kicks in and I want to know for sure. I can see the day when my family says "well you cheated before and you were okay so don't be a jerk about going out to eat with us to celebrate". Without knowing for sure and being able to wave it in their face it's going to be a tough row to hoe.

Then I did a little flowchart to help me decide.

If I had never heard of celiac disease or gluten intolerance my diet/lifestyle of choice is lower carb due to weight needed losing, sugar problems, I feel better on low carb, etc. I would do a pretty strict regimine and be slow to add back things like bread if ever - but I could cheat on special occasions.

On the celiac/gluten I have 3 possible diagnosis:

1. I definitely have celiac disease.

2. I might have celiac disease but most likely have a gluten intolerance of some kind or another.

3. I have none of the above and it really is MS or some of the other things they have looked at with me.

If the answer is #1 then strict gluten free is the way to go.

If the answer is #2 then from what I understand strict gluten free is the way to go.

If the answer is #3 then I would choose to do lower carb including no or very little bread for awhile.

So no matter what the answer is 66% chances are that gluten free is the way to go and the other option would be mostly bread/gluten free due to choice.

Sorry I'm just typing out loud here.

A couple questions:

1. If I do go to another doctor and the results are still inconclusive but he advises me to try gluten free how "crazy" and strict would I have to do it? In other words if it's a "maybe" would I have to look at pills, toasters, ingredients in restaurants, shampoo, etc. like I would if I had a full blown diagnosis?

2. Without a firm diagnosis of full blown celiac disease but a maybe and a "might be gluten intolerance" how do you convince others and yourself that it is the right thing to do? Yes I know - how you feel. But in my case the muscle/fatigue type problems come and go anyway. I may not know for 6 months or a year if they are really gone. And if it was the MS I may be in a lull that might take many months or years to know for sure.

3. How important, psychological wise, is it to know for sure? My wife told me after the meeting last night that even with a full blown diagnosis, if it was coming from a doctor that knew their gluten from their hole in the ground, we would still question - "is it only celiac disease or could I still have MS or something related?"

Sorry to go on and on but this is the biggest hope I've had in years but with that hope comes many fears, concerns, and adjustments that I have to handle - both physically and psychologically.

Thanks,

Mark

[aikiducky]

Hi Mark, welcome to the forum!

1. If I do go to another doctor and the results are still inconclusive but he advises me to try gluten free how "crazy" and strict would I have to do it? In other words if it's a "maybe" would I have to look at pills, toasters, ingredients in restaurants, shampoo, etc. like I would if I had a full blown diagnosis?

If you're not absolutely 100% gluten free, and you happen to NOT get any better - you still won't know. So I'd say it's better to go all the way, give it your best shot, and see what happens.

2. Without a firm diagnosis of full blown celiac disease but a maybe and a "might be gluten intolerance" how do you convince others and yourself that it is the right thing to do?

Convincing others isn't really a problem if you're convinced yourself. How to convince yourself... I guess it might come down to just making a decision, and sticking with it. A lot of people realize that this isn't such a big point after a while, because you'll KNOW. But some people don't have obvious symptoms, and then it can be hard. Ok this is not much of an answer, sorry.

3. How important, psychological wise, is it to know for sure? My wife told me after the meeting last night that even with a full blown diagnosis, if it was coming from a doctor that knew their gluten from their hole in the ground, we would still question - "is it only celiac disease or could I still have MS or something related?"

It seems like even people with a firm diagnosis go through a period of denial and have a hard time accepting the reality of their changed lifestyle. It does get easier with time.

I don't have a diagnosis myself (I went gluten free before testing) but I have very very clear symptoms if i have any gluten. So for me it's a no-brainer to stay gluten free. Or maybe it's my personality, I'm very confident of my ability to know what my body tells me. I realize it's not that easy for everyone.

Sorry to go on and on but this is the biggest hope I've had in years but with that hope comes many fears, concerns, and adjustments that I have to handle - both physically and psychologically.

Don't worry, that's what the forum is for! It's true that this is a big adjustment. You're wise to take your time thinking it through, that'll help in the long run.

Pauliina

[ravenwoodglass]

I agree with the others about giving the diet a good try, but be patient with the MS type symptoms. MS was one of my many " 'ah ha' that must be what it is" diagnoses. Have they done a spinal tap yet or an MRI? If they did an MRI did they find any UBO's (unidentified bright objects)? I had a cluster of these and it wasn't until much later that I found out they are considered a celiac sign in Europe but not recognized as anything here. Has the possiblilty of gluten ataxia been explored by your neuro? Mine never even thought of it even though I had daily D for 6 years by the time the 'MS" symptoms developed. I thought I would be on my canadian canes until I progressed to a wheelchair. The good news is I am now sooo much better, I still have issues but I can walk freely most of time and don't drop stuff and fall at all anymore. It was the last 'symptom' to be relieved though, it took about 6 months to really notice a consistant difference. What you have may be MS after all, but on the chance I wanted to share my story. Oh and for me sublingual B12 was very helpful with the numbness and the parathesias and also I think helped my energy levels a great deal.