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Back Again And Sick


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15 replies to this topic

#1 mela14

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Posted 18 April 2005 - 10:02 AM

Hey guys, I'm back again and feeling sick all over.
As most of you know I got the results to my genetic blood work and my biopsy results. both were negative. They were done at 4-5 months into the gluten-free diet with the exception of some accidents.
I had the tests done at Columbia by Dr. Susie Lee. she called me with the results and said the good news is that "you are not celiac and will never be celiac"..."you don't have the gene". I talked with her for a little while and explained how sick I felt. she said to work with a nutrionist for the intolerances.
so here's what happened..............after I got that news I started to second guess myself. I had some orville's redenbacher popcorn and was sick for days! Although the label didn't show gluten it did have soy which seems to be more of a problem for me. It takes days for it to get out of my system!
this weekend my hubby threw a suprise birthday dinner for me at a restaraunt. He had been planning it for months.
I really was surprised!
anway, I watched everything i ate.......he made sure they knew I had intolerances...so i didn't eat what they had.
Actually, I hardly ate. I had escarole with olive oil and garlic, some white wine (which I tolerated ok a few days before) and filet mignon (which was very raw and I couldn't eat the whole thing). Later, I took a sip of my sister's apple martini..(bad choice)
that's it! so now i am still sick 2 days later and not sure if it was the steak...they said that it was fresh although I can't be sure...or if it was the sip of drink. I was doing better and convinced that i don't have celiac attempted the sip of drink. I don't even know what was in there. If it was the steak then the restaraunt did not give my husband enough info with regards to the freshness of the meat.
this is really getting too stressful and I don't know what to think anymore. I have sooooooooo many intolerances...maybe I should just eat plain salads when I go out and bring my own olive oil. I even asked about the olive oil when they borugh me my salad. they said it was olive but it didn't taste like it so I didn't eat the salad. I have reacted to soybean oils or veg oils in the past.
yesterday was terrible with body pain, fatigue, stomach pain and bloating,vertigo and rapid heart. It was like a full blown allergic attack....but....accoridning to Columbia....the "good news ins that I don't have Celiac!"
OK..........really upset right now....at myself and at this whole thing! Gotta pull myself together for tomorrow......
I have an appt at the hospital for my immunoglobulin infusions.( for my immune deficiency).......I am still in bed today and am afraid that tomorrow I will still be sick.
Does anyone know of a good nutrrionist that I can work with in NJ(monmouth county)?
there's a really good one at columbia but it is Hike for me.

thanks,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

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#2 judy05

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Posted 18 April 2005 - 04:33 PM

Mela,

I have been following your story with great interest. Like you my GI doc said I don't have the gene for Celiac so I don't have the disease. I improved on the gluten-free diet up to a point at which I took matters into my own hands. I deliberately gave up all dairy and my brain fog and eye problems cleared up. I still had rt. sided pains and all GB tests came back okay. I then asked him about York Lab which he absolutely refused to discuss. They seem to think that if it was not their idea then any other tests are poo-poo'd. I again sought out answers on my own and sent away for the testing kit. I got the results a couple of weeks ago and I was surprised to hear that I was intolerant of corn, egg whites, and yeast as well as wheat and dairy. I did not react to gluten?? Anyway when I saw your post I wondered if you had considered this? I am following the guidelines very closely, it is very hard to eliminate corn, it's in everything, but I can feel a difference in my body. Maybe corn could be a problem for you too, since you reacted to the popcorn.

Sorry I don't know of a good nutritionist but I feel much better since I've learned what other foods to avoid, hopefully this won't last forever, they recommend returning to the other foods very slowly and carefully. I don't know if I will ever be able to do that, I intend to stay gluten-free/CF for a long time. Hope this helps. Just go back to basics and stay there until you feel better. I know how hard it is, I've been at this for 15 months. ;)
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#3 mela14

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Posted 18 April 2005 - 04:44 PM

Thanks Judy,

I too had positive York results for corn. The thing is that when I eat corn for dinner I don't get sick. So I tried with organic plain popcorn and did not get sick either.
When I had the Orville Redenbacher popcorn I became violently ill for days! I couldn't sleep....I had horrific muscle pain, migraines, joint pain, fatigue, stomach pain, bloating, vertigo. and racing heart. It was like a hangover that lasted about 4 days. the only difference being that I don't drink.
when I read the tiny print on the label ( i needed my glasses to do this)....it said soy lecithin. Soy is a killer for me! I react worse than gluten!
sometimes though, I react to certain meds even when they don't have soy or gluten in them.....or even dairy. When I read the labels on those meds it shows corn starch........ so maybe just the corn starch bothers me. Just not sure anymore. I try not to take any meds...although my urologist just put me on something... I'm not sure I will fill the script.

Take care,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#4 bmorrow

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Posted 18 April 2005 - 05:24 PM

Mel,

I am sorry to hear that you are not doing any better. I have some of the same problems as you, with the exception that I do have the gene and have been diagnosed with Celiac. Have you thought about testing through EnteroLab for gluten sensitivity? My doctor, at Baylor, told me that a person can be sensitive to gluten without ever developing Celiac. It could be that you are having a reaction, but may not have the damage. I asked him the question because my daughter does not have the Celiac gene, but has done very well since starting a gluten-free diet. She no longer has the GI issues and has been able to stop her ADD medicince.
I feel that the doctors just don't know much about food intolerances. My doctors tell me to keep a food diary and eliminate the foods that make me sick. Sometimes it seems like everything is on the list! I have also tested positive for yeast, casein and white fish allergies.

Judy,
You could also be in the same situation as Mel, with gluten sensitivity. Have you tested with EnteroLab? York told me that they could not detect gluten intolerance, since I had been on a gluten-free diet for several months. They said that I would have to eat a slice of bread every day for two to three weeks.

Best of luck to both of you. :)
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#5 mela14

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Posted 18 April 2005 - 05:33 PM

I may do the Enterolab testing but then again I already know that I feel sick when I eat gluten. I may be one of those that don't have the gene but still have the horrible intolerance to it.....along with other intolerances.
thanks for the support.
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#6 KaitiUSA

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Posted 18 April 2005 - 06:19 PM

Mel-
I am sorry you are feeling bad again. Maybe you do have a intolerance rather then celiac. Other foods may be culprits as well. Have you had a testing done to see specifically what foods you are intolerant to? Feel better soon :D
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Kaiti
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#7 mommida

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Posted 19 April 2005 - 06:16 AM

From my experience, the genetic test has 30% chance for error. (As any test has, so I 've been told.) Depending on the test you were told 90-some% accuracy. What about the small percent of inaccuracy? The last point I would like to share, not even human gene has been isolated. Entero Lab tests for more genes than Prometheus, so it seems not even the labs can agree on all of the genes associated with Celiac or gluten sensitivity. We do know that getting this diagnosed is taking an average of 11 years in the United States.

Science may not be able to diagnose you right now. If the gluten free diet helps, then stick with it. There are plenty of reasons why the gluten-free diet is easier on your stomach.

I gave up on getting myself diagnosed after my (biological) daughter's positive genetic test. DQ2 and DQ8. We are doing great on the gluten free diet.

I'll be thinking and praying for you.

Laura
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#8 junevarn

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Posted 19 April 2005 - 06:36 PM

Hi Mel,

You might be intolerant to the oil they use on the Redenbacher popcorn. I get terrible reactions to rancid oil, probably the sickest I have ever gotten. I was throwing up , diarrhea and palpitations all night three times on a cruise last year.
Who knows how long those packages sit around.

I have found out that I am intolerant to corn as well. When I eat it I just dont feel well. :(

By the way I tested slightly positive to gluten with York and I have one of the main genes for celiac, HLADQ-8. I also had fecal anti gluten and anti casein antibodies as well as the anti-tissue transglutaminase. Thats how I found out. I would trust yourself. I'm lucky that I have found a nutritionist who works with an MD. I have been doing an elimination diet to see what other intolerances I have. It might be a good idea to try an elimination diet for a week and then slowly add foods to see what intolerances you have.

I'm sorry that you are not feeling well.

Take care, :)
June
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#9 junevarn

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Posted 19 April 2005 - 06:37 PM

Hi again Mel,

I forgot to say that I was tested through Enterolab.

June :D
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#10 mela14

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Posted 19 April 2005 - 07:40 PM

Thanks for all the helpful information. I think that the next step would be to test with Enterolab...just for my own peace of mind.
I am still continuing to be gluten-free regardless of what the drs told me. I just don't feel well when I have it. It's just the fine tuning that needs work and avoiding the many other intolerances!
I called Columbia Presb and spoke with Ann Lee the nutritionist there. she is great. I told her of my results and what has been going on with me. She seems to be saying the same thing that all of you are saying....I am probably intolerant to gluten along with other foods. She also said that not all the genes have been identified in celiac and that the biopsy was done too long after going gluten-free to be of any value.
so....back to basics....and no gluten!
I made an appt to see her next week and after that we are going to do telephone appts as it is a bit of a hike to get to her and would turn into an entire day event!
Thanks for all the info.
One more thing. If i do the Enterolab at this stage of the game do you think it would be affected by the fact that my diet is gluten restricted? Also, today I received my immunoglobulin infusion so my IGg levels will be back up to normal. I will also have other antibodies from donor IGg that might affect my overall IGg tests. For example: I've never had the pneumo vaccine or pneumonia but when I am on infusions I test positive for the antibodies. My dr said this was because of the IGg replacement that I receive which is pooled from LOTS of donors. My IGA is another story. It is ALWAYS low...and there is no replacment for IGA. What I am told is that you cannot give IGA as it would cause an allergic reaction. so what you have is what you get. My IGA levels are low......so I'm not sure how that would play out with making any sort of assessment with the Enterolab results. How iwll that affect the results? would I just be wasting my money?
sometimes this just gets to be too complicated that I feel why bother....just do the diet. On the other hand.........with all my other health concerns and the need for well domented numbers....I fele that maybe I should do it.
OH well................
tomorrow is another day.....I'll have to try a little harder in avoiding other foods that I am intolerant to. Maybe it will get easier with time.

thanks, :)
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#11 luceemarie21

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Posted 21 April 2005 - 12:46 AM

Thank you for answering my question on depression, its great to know that I'm not alone.
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#12 westiepaws

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Posted 22 April 2005 - 08:04 PM

Hi Mel, Enterolab and my local endocrinologist are the only reasons I know that I have the antibiodies and the gene. In March I still showed as having at least twice the normal level of antibodies even thought I started going mostly gluten-free back in December 04, barring some accidents/ill-fated rationalizations.

The people who run Enterolab are really nice and very interested in the individual's situation, too. You might even just give them a call or e-mail them and share your questions/concerns re: whether the testing would be worthwhile. Knowing about the genetics can really help, even if nothing else shows up.

Hugs,

Westie
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#13 mela14

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Posted 24 April 2005 - 04:59 AM

thanks westie,
I will email enterolab and discuss the gene testing with them.
You said that you had positive antibodies (which I also have) and positive gene. Was the gene testing through Enterloab or your endocrinologist?
I am still feeling so poorly and don't know who do go to. I have an appt at Columbia with the Nutrionist there this Tues and then and appt with a Neurologist next week. I can't take the tingling and sizzling ang burning that I am getting. It seems to be worse after offending foods. Just not sure about anything anymore. The fibro is in a flare and try as I might with my diet....I am still having reactions.
Take care,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#14 westiepaws

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Posted 24 April 2005 - 07:36 PM

He Mel, let's see -- I had initial blood work -- $1,000 worth!!! -- done at a local lab and sent to my endocrinologist. He was checking me for thyroid and adrenal problems, anything that could cause my fatigue/bloating/etc., to rule some things out. That bloodwork indicated allergies to gluten and possible celiac. (I got tested only because my mom was diagnosed. I thought at the time my problems were the result of being a caregiver to my beloved and then being widowed 1 1/2 years ago -- in hindsight, the stress of caregiving/widowed most likely triggered the celiac, which caused the bloating/fatigue, based on other posts I've read here.)

Once the blood tests came back, my endocrinologist had me do the stool test and the gene testing (cheek swab, very easy) through Enterolab ( and those tests came back positive and named the exact genes.) You do the samples in your home; DHL picks them up from your front door (you don't even have to be home). Then Enterolab emails results to you and any dr. you choose. I believe the cost was $300.

Once you have samples on file with Enterolab, they can do additional testing for I *think* up to a year. I had them also test me for allergies to corn and eggs and something else (drawing a blank). Those came back negative.

I hope this helps a little! My endocrinologist thinks a lot of Dr. Fine, who founded and continues to run Enterolab. If I remember correctly, they are online at www.enterolab.com. Don't hesitate to call them if you have any questions about technical things, and if I can answer anything like this from the average person point of view, I will!
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#15 mela14

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Posted 25 April 2005 - 04:35 AM

hi westie,
thanks for answering....so you had the gene testing done through Enterolab...at your endocrinologist's orders. Ok.... i had the gene testing done at Columbia through a blood test. They tested for 2 celiac genes. both were neg. maybe it's not as specific as the stool test.
I am see the nutrionist tomorrow...then a nuerologist next week. My fibro and fatigue have been bad and I've been having a lot of sizzling, tingling....pins and needle like sensations. the sizzling is sometimes unbearable.
My "urologist" prescribed neurontin and effexor for this( because of IC and vulvodynia) but I want to make sure with the "neurologist" before I take it. Next i need to do a check up with a new endocrinoligst. I just don't want to start popping pills...i don't normally react well to pills and want to limit what I take.
there are so many things going on. I believe it all came from a series of traumatic events too. I just want to get to a point that each day is not a struggle. I feel that I am fighting so many different things. Food being the biggest one...with all the different intolerances.
Oh well......thanks for your input. I will take it all in and try to make the right decision for myself.
One thing I am going to do for myself these next few days is go off of coffee (if I can) or at least drink less of it. i think it may be adding to irritating my gi tract. Even though i don't drink a lot of it...the little bit may be bothering me. Boy do I love the smell of it though!
Take care and feel well,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!


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