Guidance Needed From Those Who Have Been There

[MrsJWells]

Hi Everyone,

I am Joann and I am sooooooooo happy I have found you all! I need some guidance from those that have been there done that. I want to make sure I take the right path. Here is my history (I will try to keep it short but this disease does not lend itself to condensed versions of anything, lol)

2001 I took Zyban to quit smoking. 30 days into it I opened a bottle of wine, took 3 tiny sips, began sneezing uncontrolably, gums started itching, tongue swelled and I was COVERED in hives. Called Dr. Took benydrill (spelled that wrong), quit taking the Zyban. Since then any alcohol gives me hives, so....I do not drink.

Dec. 2007 I had this awful eppisode about 3 hours after eating dinner, my gut was in PAIN. Felt like contractions going up my back, eventually I began to vomit, looked like bile cuz it sure was not my dinner.

Since then I have had about 10 episodes like that one. The last one in Oct 2009, my gut would be unhappy and often it felt like a really large stuck burp, soooo I would drink alka seltzer. The contraction thing started and I took alka seltzer, ended up at the vomit bile stage again AND my face was swelling and my throat was tight. Went to urgent care this time, they gave me an epi shot and figured I am now alergic to asprin.

Also gave me Zantac to take for GERD. I am thinking this is my gall bladder. But what do I know.

In Feb 2010 They sent me for a scope, thinking I may have a hiatal hernia, or some other something. Nope..all looks fine, no ulcers, no hernia, GI says you have a classic case of GERD...here is a new prescription.

I took the prescription for 6 months, nothing was any differenc. My gut just hurt! In April I got pnemonia and it took about 5 weeks for it to go away and a ton of antibiotics and breathing treatments.

Finally I went to a new primary care doc, a week ago. He drew some blood and sent me for a CT scan. My bloodwork came back good for all he checked EXCEPT my Tissue Transglu Ab, IgA ...the result was a 51. The lab info says 31 units or greater = Moderate to Strong Positive.

My CT came back fine EXCEPT for a fatty liver. He has refered me to the GI again. That appt. is Oct 14. I have an appt with my primary on Monday to discuss this further.

Here is where I need guidance. Do I really need the biopsy? The GI appt is a month away, and I know it will be 2 weeks after that before he does the biopsy. Must I really be in pain for another 6 weeks?

I am going to ask my doctor to check EVERYTHING, thyroid, vitimin D, iron, cholesterol and everything else they can check.

I just want to feel better. I am sick and tired of being sick and tired. I have read and read and read and I do have many of the symptoms, my joints ache and hurt, are often stiff. My bowels have a mind of their own (I thought that was normal, I was wrong). I am tired 98% of the time. My gut hurts, is bloated often, I belch and pass more gas than my entire family put together (I have 6 kids & 3 grandbabies). I have been the fiber monitor in our family. I try to make sure everyone gets enough. A year ago I had a bout of vertigo, lasted about 9 months and then about the time I got pneumonia it went away.

Thank you for reading my novel. Please offer me your advice. Doctors only practice medicine. They do the best they can but most often those in the trenches are the ones that know soooo much more.

I hope everyone is having a great weekend.

Thanks,

Joann

[Skylark]

Welcome to the board. TTG is a pretty good indicator of celiac and response to the diet plus TTG would mean you're celiac.

There are some people who are not willing to stick to a really careful gluten-free diet without a doctor formally diagnosing celiac. Right now, for most doctors the formal diagnosis requires a biopsy.

If you are willing to accept that you need to be on a strict gluten-free diet for life because you might have celiac, and you are an adult who does not need the medical diagnosis for educational accommodations, then you can take the TTG as a diagnosis. It's still not a bad idea to get scoped to make sure there are not any other problems. Also, the TTG should fall after you've been gluten-free for a while so that helps you be sure you're celiac.

I was never diagnosed at all, and getting other care like having vitamins monitored has not been a problem for me. All the doctors I've seen tell me it's not worth doing a gluten challenge because it will make me sick for inaccurate tests. Gluten makes me sick enough that I avoid it very carefully.

[MrsJWells]

Welcome to the board. TTG is a pretty good indicator of celiac and response to the diet plus TTG would mean you're celiac.

There are some people who are not willing to stick to a really careful gluten-free diet without a doctor formally diagnosing celiac. Right now, for most doctors the formal diagnosis requires a biopsy.

If you are willing to accept that you need to be on a strict gluten-free diet for life because you might have celiac, and you are an adult who does not need the medical diagnosis for educational accommodations, then you can take the TTG as a diagnosis. It's still not a bad idea to get scoped to make sure there are not any other problems. Also, the TTG should fall after you've been gluten-free for a while so that helps you be sure you're celiac.

I was never diagnosed at all, and getting other care like having vitamins monitored has not been a problem for me. All the doctors I've seen tell me it's not worth doing a gluten challenge because it will make me sick for inaccurate tests. Gluten makes me sick enough that I avoid it very carefully.

Skylark,

Thank you so much for your response! I just want to feel better! And today I did! Today was the first day of being gluten free and today I felt sooo much better! Still had some pain, gas, etc, but soooooooooooooo much better than I have felt in weeks! I really don't care if a doctor says I have celiac disease or not, I just want to feel good again. If this is what does it then I am extremly commited! I went to Whole Foods today and feel good that there are many choices.

Again, Thank you so much! Sometimes all we need is a bit of reassurance! Thanks!

Joann

[sb2178]

If you don't want the scope, but still want more confirmation, you could ask for the EMA test and/or the genetic tests. EMA is more specific to celiac, but I think it tends to show up later in the disease. Genetics, positive blood work, and a response to diet is pretty much airtight.

A scope is also not a bad idea in case you have problems recovering because it gives you baseline intestinal damage. Later scopes would show healing or not, and help determine what's going on if your symptoms don't resolve. But, that is a long wait and it can be pricey.

[Skylark]

Skylark,

Thank you so much for your response! I just want to feel better! And today I did! Today was the first day of being gluten free and today I felt sooo much better! Still had some pain, gas, etc, but soooooooooooooo much better than I have felt in weeks! I really don't care if a doctor says I have celiac disease or not, I just want to feel good again. If this is what does it then I am extremly commited! I went to Whole Foods today and feel good that there are many choices.

Again, Thank you so much! Sometimes all we need is a bit of reassurance! Thanks!

Joann

Yay! Good luck with the diet and I hope it works out for you. Lots of experts here if you need any help with what to eat. Also keep an eye on dairy. Lots of us are sensitive to it at first, either lactose intolerant, casein-sensitive, or both. My own casein sensitivity went away after about a year off gluten once my gut healed back up.