Gf For 4 Months....but Doing Biopsy

[mela14]

I finally made it to Columbia Presbyterian yesterday. I had a really good meeting with Anne Lee the nutrionist and learned some more. I then saw dr Susie Lee for my consult. I told her what had been going on and she suggested a gluten challenge and the doing a biopsy a few weeks later. I told her that I would not have the gluten as it makes me feel worse.. She looked at the blood results that I brought and although I had a strong positive gliadin AB the other tests were negative. I told her that I had been receiving Immunoglobulin infusions monthly for an IGG deficiency and that my IgA is also extremely low however I have not had an infusion in 3 months. She took everything I said into consideration. I told her that I have been attempting gluten-free for about 4 months and that my gliadin AB have dropped from 66 to 35. I'm doing better but the number is still a little high. She wasn't so concerned with the number and talked a lot about the other tests that came back negative. Of course she wants an accurate diagnosis and made certain to tell me that gluten-free is a life long commitment and she wants to make sure that I have celiac before putting me it. I had blood tests drawn to check the DNA, From what I understand, if that is neg chances are I don't have celiac. She said that some people have an intolerance to it and improve on the diet even if they are not celiac. She also said that a lot of other disorders get better without guten....like Crohn's. So........while we are waiting for the blood results she thought it would be a good idea to do the biopsy. She said if the damage was bad enough being gluten-free for 4 months would not have totally healed me.

Is this just a sales pitch for the endoscopy???? Either way I gave in to doing it this friday as anytime after next week is not good for me. My husband and I have been waiting for our new office to be ready and it looks like things will be happening monday so it made better sense to do it this week before we get involved with our business.

I also told her that I've had endoscopies(last one 5 years ago)that revealed a gastritis. I also had colonoscopies which revealed a little inflamation and IBS.

So...what I am concerned about here is that I am doing this test and it won't show anything and then I won't know what is going on with me. I've been feeling so poorly for sooo long and in such pain that I have been running from dr to dr. Something is not right. One thing she did say to me was that sometimes it takes up to 3 year on the gluten-free diet to feel better especially with someone like me who has been sick for so long and has had so many other health problems.

I am just so angry at drs for not getting this right years ago. So, I'm afraid they won't find anything but then again I am afraid that they will. Either way, the treatment is the same....I am not going back on gluten. I just pray that with time a lot of these other intolerances and problems will get better. Then of course I was told that it sometimes goes on for so long that some patients don't get well enough... A lot of my symptoms are classic celiac..........and they also told me that the sizzling in my arms, legs and back of my neck could be a neuropathy from the celiac.

I am so stressed by all of this. Today was a bad gut day.

Thanks for reading,

[plantime]

I went gluten free Feb 14 04, and had biopsies taken Sep 15 04. There was healing, but there was still enough damage to get a positive diagnosis. Good luck with yours, I hope you get definitive answers and good help!

[rmmadden]

We all know your frustration and can simpathize. It's no fun waking up each morning not knowing how you are going to feel that day. The only thing you can do for yourself is to watch what you eat and let time hopefully heal you. I was told by a celiac disease veteran that you can't measure the effects in days or even weeks but, over time you should notice you're healing and hopefully feel better.

Best of Luck!

Cleveland Bob

[FaithInScienceToo]

I had my endoscopy 2 months post going gluten-free, as I put myself on a gluten-free diet before finding out that it would affect my tests. I also had my Enterolab testing done 6 weeks post, was positive for everything (antibodies aand gene) and had a malabsorption score at that time of 286 (300-500=mild damage WHILE consuming gluten regularly)...I believe that the damage I had from gluten had already healed a lot by then (within 6 weeks), so I do not expect that my endoscopy results (which I will receive this next weeek from my GI doc) will show any damage to the vili...but, I have read extensively now about celiac disease, and one can have all of the associated problems without the vili damage...perhaps due to 'leaky gut syndrome' from the body's inabilitty to break-down gliadin?...or due to inept biopsy procedures (cutting at wrong angles and not enough areas sampled) or perhaps due to results not being 'read' properly.

In any case, I feel as you do...I will never again ingest gluten, no matter what the endoscopy results reveal...It was my GI docs idea to do it (after I went to him for a scary hemmorhoid)...He said I hadn't been gluten-free long enough to make a difference, but how would he know? Research shows that many people can heal completely within 2 months time...Anyway, I thought I should have the test to be sure nothing else was wrong.

So, I also know your frustration...and I feel for you, too...One day, perhaps, the diagnosis process will be very clear-cut...until then, we MUST be our own health-care managers/educators...

Keep thinking about the positive changes ahead for you...don't allow yourself 'the luxury' of a negative thought...you need all of the healing energy you can muster.

Love, Gina

[Guest BellyTimber]

Gina, positive changes and our own health care managers/educators are phrases that might be aimed specially at me right now.

Mel, "sizzling" is a word that rings a bell with me, in the same parts.

Except for no previous endoscopies your story's a bit like mine. Your question strikes a chord in my memories. Perhaps your specialist is being relatively balanced compared to some we've heard about?

Wishing you all the positives whichever way you decide this (myself, I thought I had plumped for a 'no' but now I'm wondering again)

Michael

[bmorrow]

Mel,

I went through alot of the same things that you have with the testing. Unfortunately, my biopsy came back inconclusive so I went through months of wondering what was wrong. The doctor kept telling me that I was intolerant to gluten, had leaky gut syndrome, and malabsorption sympdrome, but would not use the word Celiac. He believed in EnteroLab and was trying to do everything to help me. That was the reason he referred me to the best GI, in his opinion, that he could find. Since this doctor knew Dr. Fine personally and the validity of the tests, he had no problem with giving me the diagnosis of Celiac.

I hope the best for you!

[mela14]

Hi guys and thanks for all the responses and well wishes. I am ready to hit the sack as get up early to go to Columbia tomorrow morning. I had a good eating day today. I was famished and felt like I was eating all day. I made Turkey soup and it actually came out good. After spending much of the day crying because of not feeling well (fatigue, muscle pain and racing heart) my hubby came home and surprised me with my nephews (ages 6 and 8)! he called my sis and asked if he could borrow her boys because I was having a bad day and he knew they would chear me up. Well ...it did the trick. They were all over me with hugs and kisses. I actually went back to her house for dinner (brought my own food ...they were having chinese) and then played board games with them. So all in all.....it was a fun night. Kids have a way of making you feel special even when you feel horrible. They don't even kow you are suffering.

So tomorrow I'm having the biopsy and we'll see what happens. Either way I'll continue gluten-free but try to scrutinze even more. The other thing I need to investigate some more is hormones. I have been on a low dose estrogen patch for about 3 months now and think it is helping but maybe it is not the right amount. When trying to increase the amount about a week ago I felt more nauseous so I went back to the lower dose. After having my total hysterectomy 2+ years ago, I did not go on hormone replacment because of suspected endometriosis. All the pathology reports were negative for endo.

Well, I felt worse with headaches and menapausal symptoms without hormones. Since being on HRT I have been sleeping better and not having the night sweats or hot flashes. Maybe other hormones need to be checked to make sure they are ok. who knows they could be contributing to this racing heart problem and feeling debilitated.

The fibormylagia pain is off the charts..........I pray that it will get better with time on a gluten-free diet. Something just feels so wrong. I feel so malnourished and eating doesn't make me feel better. I hope that Columbia Presbyterian can live up to the reputation that precedes it. I need help....have been all over for it....spent tons of money (really) ....lost so much because of misdiagnoses.......and really need someone to help me finally get it right. I realize that I cannot do it alone.

I know I am on the right track but need help with fine tuning my needs. Sometimes it is so hard to make sense out of it. And there are times when things are right under your nose and you can't even see it.

I made the best of a rotten day today....I guess there was a reason why I moved back to NJ........having my family close helps(sometimes)....especially when those boys are around.

I'll report back tomorrow after the procedure.

Thanks again,

[mela14]

Just reporting back that my experience at Columbia Presbyterian was exceptional. The nurses were kind and considerate. Dr Susie Lee was just sooooooo pleasant. I forgot what it was like to have drs on your side and show some concern to their patients. I was actually treated like a person by all at the hospital starting with the receptionist.

After the biopsy Dr Lee said that my intestines looked OK. She said that I had a hiatal hernia........which I've know about and take zantac or like drugs occassionally. So....I guess I have to wait for biopsy results. Either way my gut still does not feel right and feels so irritated! why couldn't she see that. this is really messed up. You feel one way but you show up another way.

She said that she would call me in about a week to discuss the results. I told her that I would prefer to make the ride in. I feel that I ouwld get a better appt in person. I also told her that if all the results are negative I still need to be pointed in the right direction with how I am feeling. I also want to continue working with Anne Lee. Before the scope I spoke with dr Lee a little and told her of some other syptoms that I have that I forgot to mention at the consult. She said that I probaby DO have fibromyalgia as well, separate from whatever is going on GI wise. I was hoping that one could be made better by the other..........stick to the diet....muscle pain and fatigue should get better. I reminded her again of the racing pulse especially upon waking and after eating certain foods and she didn't say anything. I guess this will be something to take up with Anne Lee ....it seems to ber her department. She DID ask about my thyroid but it seems to be ok. The next step would be to have all my hormone levels checked with an endocrinologist...especially since I had a total hysterectomy 2+ years ago and only started on estrogen patch about 3 months ago.

There is soooo much going on here and it is so hard to figure out but I guess we all have to be our own drs. Next week I will contact my hematologist and schedule bloods to be drawn to check all my IGG levels as I have an immune defeciency(which he believes is secondary to celiac). I haven't had an infusion in 3 months and we are anxious to see if the levels have come up on their own just by avoiding gluten. Wouldn't that be great! Having Immunoglobulin infusions and being hooked up to an IV for 5 hours every month is no fun.

that's it for now. Other than a raw throat....they scratched it with the scope......everything went well. Yesterday I rested and had lots tea. It still feels like a sore throat and it is hard to swallow. AS for GI symtpoms I was a little irritated yesterday and probably had too much salad with dinner as it felt more irritated after eating. This morning I have a lot of lower abdominal/pelvic irritation. Gotta watch my diet today.

thanks for all your support,

OH, Beverly in Arkansas ....who is Dr. Fine? Does he have a website?

[FaithInScienceToo]

Just following-up on this thread...how are you doing now, Mela?

I've been very busy with a move, and a visitor and some traveling.

Hope this finds you well,

Gina