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Old 10-11-2009, 01:32 AM
t8tersalad t8tersalad is offline
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Default I have my Enterolab results! I'll take any advice I can get!

Hello, I am new here Happy I found everyone! I will try to make this short and I appreciate your thoughts. My problem started last year, April 12th, 2008 to be exact. I woke up with swollen hands and feet, ankles, wrists...which got really bad over the next few weeks. The only thing that happened prior to this was I had some Thai food, hour after I ate it, my ears blocked out for the entire evening until the morning. Then my lips were swollen a little for about 3 weeks, that went away and then the other swelling happened. Went to the ER. They ran EKG, tested for RA, Lyme, ANA and Lupus. All negative, but said the ANA was positive. This was at a hospital while out of town, I wasn't near my local Doctor.

When I arrived back home, went to my Primary Care Dr, and he flipped out. Figured there was some type of blockage and ran a lot of tests, X-rays, sent me to get CT scans, sent me to get ultrasounds...all negative. Blood work for RA CCP IgG Antibodies, Lyme AB/Western Blot Reflex, Lupus, Hepatitis HBV/HCV, HIV, Epstein-Barr, Parvo virus B-19, CMV Ab IgM, CMV Ab IgG, thyroid T4 & TSH, Uric A + RA Qn, Comp Metabolic Panel, Anti Nuclear Antibodies Direct. My Doc was stumped, didn't know what to tell me. Said I'm getting older. Told me I looked good and basically that was it. I didn't feel good, I know that. My PC Dr sent me off to a Rheumatologist, who put me on Prednisone and Hydrocholizide. He ran all the blood work again, several times, this went on for a year between all these Dr's and tests. In the end, my Rheum Doc wanted to put me on Methotrexate. NO THANK YOU. If I'm on my death bed, then you can give me that. I had reactions to Cipro back in 2006, I'm not taking Methotrexate.

The problem I was having was the severe edema, very painful, hard to even hold a pen, open a yogurt lid, much less a bottle of water. Well, I'm tired of the cankles, tired of my hands being swollen and hurting. I had so much fluid in me, it was painful to drive a car. I ended up ordering a hair analysis, so desperate for answers. Started to go to Whole Foods to buy organic veggies to juice in my juicer. Noticed the Gluten Free aisle, but wasn't familiar with it. Then heard about Hasselback the next morning when I clicked on MSN homepage, how it hurt her so much to drive her car, and how she finally felt well after starving in the Outback. The next morning clicked on Yahoo.com, there it was again, another GF Article. A light bulb went off. At that time I was cutting back on foods. Thought I should lose some weight to maybe force this edema out of me, lol.

I noticed when cutting back on some foods, that some of the pain was subsiding in the bones of my hands, the swelling was there, but the bone pain was decreasing. Started to eat GF as best I could. It's a learning curve as I love breads and cakes and cookies and pasta :-) Now, I have been extremely stressed back in 2008 when this all started and pretty stressed since then. My hands were getting better, not swollen when waking up and I thought I was on my way. Still the edema not completely gone, but figured it would take a few more weeks. Ended up getting a strong UTI infection and was put on antibiotics in July.

Then mid July comes around and I had another stressful event..and even more stressed now. So, trying to be GF as best I can, not sure if I'm gluten and dairy, so I tried to cut here and there, I slipped some, several times as I didn't know what I could and couldn't eat, plus it's hard get used to at first, still learning. I had the dairy pretty much eliminated. Family looking at you like your nuts or a picky eater.

Right now, I've had migraines for the last two weeks (started getting those at age 27, I'm 39ish now), tired, feel little sore throat, dry cough, stomach issues, stomach ache, white tongue, "spit test" was strings, little bit of heart burn, insomnia, tight chest feeling, feel like I have a lump in my throat when I drink water, waking up with hands very swollen and achy all day, muscles and joints pain, dizzy and nausea today really bad, feel like just sleeping. Not eating much, due to not sure what to eat, since it looks like CA yeast might be an issue too. Which then makes my head hurt to even focus on what I can eat with CA possibly an issue and way too tired and weak to go to the grocery store. Do you think CA is causing all of this and triggered the gluten sensitivity? Is this due to a ragging yeast infection inside me or simply a die -off reaction? I can't help but wonder if the CA was there back in April 2008 when this all started and just now has developed into systematic CA/leaky gut and if the damage to my joints will be reversible? Any help, tips, thoughts I will appreciate so much. Here's the stool test results. Shows Gluten Sensitivity.

Date: 10/5/2009


A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA: 12 Units

Fecal Anti-tissue Transglutaminase IgA: 4 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 7 Units

HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

For more information about result interpretation, please see http://www.enterolab.com/StaticPages...rpretation.htm

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health.
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  #2  
Old 10-11-2009, 12:37 PM
Naominjw Naominjw is offline
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So, it looks like you may have some problem with gluten.

I wanted to tell you about my story... are you having anything with saccarhin or aspartame? That's what initially put in in the ER with every joint of my body inflamed. It was called "allergic arthritis". I also got hives. I didn't even MEAN to consume these things! But the warnings came off, and it was in my cough medicine, and then was even in the liquid benadryl! It was in the Pepto-bismol. I look carefully now. Caught it when the only gum I ocassionally chew suddenly switched their formulation to one of these artificial sweeteners.

At this point, I do not trust Splenda, either, just because.

Someone I know have symptoms like yours (so similar it made me wonder if you are the person I know!) She went gluten free then started eating it on an ocassional basis. Then... she had a neurological problem landing her in the ER.

I can't help but wonder about the artificial sweetener's effects on some of us who are sensitive.
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  #3  
Old 10-11-2009, 02:26 PM
GFPaperdoll GFPaperdoll is offline
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Posts: 251
Talking

I totally agree with Naomi on the artificial sweetners. I am allergic to all of them. & I do not listen to anything that they put out how safe stevia, agave syrup & all the rest are. They are not for me!! Be careful about vitamins. I am allergic to all those things that end in "tol". Mannitol, sorbitol...

Do start taking a B12 & vitamin D. I would start with 4,000iu of D everyday...

I suffered with UTI for years & years & years... totally gone now that I am GF. If I get glutened more than once, I might get one.

In addition to that you should run from any label that has "natural flavor" and "natural flavoring". Companies have "cleaned up" their labels with that natural flavor moniker. Natural flavor can be & usually is MSG!!! Of course it can also be barley malt or any number of other foods... if it is something wonderful they would just tell us on the label, right?

IMO, you are not only dealing with a gluten problem but an allergy. It is possible to have them both. I have a friend that is celiac & allergic to wheat & she is also allergic to sorghum. Her whole extended family is allergic to sorghum. Which I find fascinating. If she gets cross contamination with wheat her head swells up like a balloon. She will also get a migrain.

I think you did ask for advice right lol, most of us have plenty of that.

rethink how you eat, only eat whole foods, do not add in the bought GF grain products until you are completely well & can add them in slowly one at a time. Give up dairy while you are going gluten free - I think you said that you did that. It is very important. (we all hate to give up dairy, but in about 3 weeks the craving goes away).

Pick out some foods that seem safe to you - when you eat them you feel good. Those probably should not include the following: eggs, nuts, soy, white potatoes, tomatoes, & corn. These are common allergens/intolerances for us. Not all of us have all of these food problems. But in the beginning of your journey into healthy eating, it is better to weed out some of the common foods that cause problems. Add them in later...

Some of my ideas for foods for you would be to add in baked sweet potatoes, kale, broccoli, cabbage, & carrots. Up your meat intake & eat a variety of meats & fish. snack on meat & a fruit. Be careful of bananas & tropical fruit, they can cause lip swelling & throat swelling if you have an allergy. The exception would be pineapple, if you can tolerate fresh pineapple, I think that it is wonderful for your digestion. It is one of my "safe" foods, but may not be for you.
If you do not have a crock pot you should probably get one. It is so convenient to come home to dinner all ready & hot!!

Beverages IMO should be water. Maybe some 100% welch's grape juice diluted with water.
welcome & let us know if you need help with what to eat. Really we eat very well, I know that seems hard to believe at first!!

oh I am adding that someone else on these boards have the same genes that you do. I cannot remember who it is at the moment. I hope they pop in here, if not when I see the info on their signature I will let you know.

Last edited by GFPaperdoll; 10-11-2009 at 02:33 PM. Reason: added comment on genes
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  #4  
Old 10-12-2009, 03:05 PM
Zonulin Zonulin is offline
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Two things jumped out at me, althougjh I will need to re-read your post when I have more time, t8tersalad! It sounds like you had a terrible reaction to the Thai food - I wonder if it was related to MSG? That stuff is bad news...also - are you taking a probiotic? The Candida can take over after antibiotic "treatments" (which really muck up your natural fauna and flora). Have they checked for a Candida albicans overgrowth? Do you eat much sugar? It seems that the doctors always go nuts trying to find a huge dis-ease instead of looking into the things you do every day (ummm....EAT) The last thing they're looking for is some type of food intolerance which is triggering the symptoms...

Karen
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Old 10-12-2009, 10:24 PM
can can is offline
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Smile Yes---welcome

ALSO---be careful with cross-contamination and cross-reactivity. Be careful with dairy, nightshades, peanuts and soy. Try and limit all high fiber grains and legumes while the intestines are in trouble. Be careful with corn and maybe sorghum and millet. Good luck.
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  #6  
Old 10-12-2009, 10:34 PM
can can is offline
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Smile One More Thing

For me, being gluten-sensitive is a blessing in disguise! Eating healthy can be so rewarding in many ways never thought possible at the beginning!
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  #7  
Old 10-22-2009, 08:52 PM
t8tersalad t8tersalad is offline
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Default

Quote:
Originally Posted by Naominjw View Post
So, it looks like you may have some problem with gluten.

I wanted to tell you about my story... are you having anything with saccarhin or aspartame? That's what initially put in in the ER with every joint of my body inflamed. It was called "allergic arthritis". I also got hives. I didn't even MEAN to consume these things! But the warnings came off, and it was in my cough medicine, and then was even in the liquid benadryl! It was in the Pepto-bismol. I look carefully now. Caught it when the only gum I ocassionally chew suddenly switched their formulation to one of these artificial sweeteners.

At this point, I do not trust Splenda, either, just because.

Someone I know have symptoms like yours (so similar it made me wonder if you are the person I know!) She went gluten free then started eating it on an ocassional basis. Then... she had a neurological problem landing her in the ER.

I can't help but wonder about the artificial sweetener's effects on some of us who are sensitive.
Hello!

Are you feeling better now? After stopping the fake sugars? I stopped the Fake Sugars in March 2009. In May 2009 I had the hair analysis done by Dr. Janet Hull. The results showed high Barium (fake sugars), aluminum, antimony, arsenic,bismuth, lead, uranium, nickel,silver, high tin and high titanium. I've been staying away from it ever since. I've used it ever since I was 18 and drank about 2 cups a coffee a day, each with about 4-5 packets of equal!
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  #8  
Old 10-22-2009, 11:28 PM
t8tersalad t8tersalad is offline
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Default

Quote:
Originally Posted by GFPaperdoll View Post
I totally agree with Naomi on the artificial sweetners. I am allergic to all of them. & I do not listen to anything that they put out how safe stevia, agave syrup & all the rest are. They are not for me!! Be careful about vitamins. I am allergic to all those things that end in "tol". Mannitol, sorbitol...

Do start taking a B12 & vitamin D. I would start with 4,000iu of D everyday...

I suffered with UTI for years & years & years... totally gone now that I am GF. If I get glutened more than once, I might get one.

In addition to that you should run from any label that has "natural flavor" and "natural flavoring". Companies have "cleaned up" their labels with that natural flavor moniker. Natural flavor can be & usually is MSG!!! Of course it can also be barley malt or any number of other foods... if it is something wonderful they would just tell us on the label, right?

IMO, you are not only dealing with a gluten problem but an allergy. It is possible to have them both. I have a friend that is celiac & allergic to wheat & she is also allergic to sorghum. Her whole extended family is allergic to sorghum. Which I find fascinating. If she gets cross contamination with wheat her head swells up like a balloon. She will also get a migrain.

I think you did ask for advice right lol, most of us have plenty of that.

rethink how you eat, only eat whole foods, do not add in the bought GF grain products until you are completely well & can add them in slowly one at a time. Give up dairy while you are going gluten free - I think you said that you did that. It is very important. (we all hate to give up dairy, but in about 3 weeks the craving goes away).

Pick out some foods that seem safe to you - when you eat them you feel good. Those probably should not include the following: eggs, nuts, soy, white potatoes, tomatoes, & corn. These are common allergens/intolerances for us. Not all of us have all of these food problems. But in the beginning of your journey into healthy eating, it is better to weed out some of the common foods that cause problems. Add them in later...

Some of my ideas for foods for you would be to add in baked sweet potatoes, kale, broccoli, cabbage, & carrots. Up your meat intake & eat a variety of meats & fish. snack on meat & a fruit. Be careful of bananas & tropical fruit, they can cause lip swelling & throat swelling if you have an allergy. The exception would be pineapple, if you can tolerate fresh pineapple, I think that it is wonderful for your digestion. It is one of my "safe" foods, but may not be for you.
If you do not have a crock pot you should probably get one. It is so convenient to come home to dinner all ready & hot!!

Beverages IMO should be water. Maybe some 100% welch's grape juice diluted with water.
welcome & let us know if you need help with what to eat. Really we eat very well, I know that seems hard to believe at first!!

oh I am adding that someone else on these boards have the same genes that you do. I cannot remember who it is at the moment. I hope they pop in here, if not when I see the info on their signature I will let you know.
Thank you for the tips! I am allergic to some type of food coloring (can't eat lucky charms, trix, or heavy sugar food colored cookies) seafood, international house coffees, roses, cats, cigar & cig smoke, bleach...I do feel sorta lost and overwhelmed. I know I 'll get used to my new 'menu". I've noticed other people have a lot higher result on the enterolab test...mine seems sorta low. I wonder am I as sensitive, do I have to eliminate all gluten for the rest of my life as mentioned in the test results? I am confused...lol As you can see. I have not had the blood test, should I? Is enterolab test all I need? I know I don't feel like myself and feeling really down. The swollen ankles and swollen "sausage" fingers with huge looking knuckles is the reason. It hurts doing the normal simple daily tasks, just opening things has become painful. I was always so happy. I want me back, and now after a year and a half, I'm wondering if I ever will be.
Is the gluten the cause of my hands to be this swollen? Even after I've cut back on gulten? Or is that a side effect from cutting out the gluten?

I'm really wanting a cupcake and a reuban sandwhich....lol
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  #9  
Old 10-22-2009, 11:42 PM
t8tersalad t8tersalad is offline
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Quote:
Originally Posted by Zonulin View Post
Two things jumped out at me, althougjh I will need to re-read your post when I have more time, t8tersalad! It sounds like you had a terrible reaction to the Thai food - I wonder if it was related to MSG? That stuff is bad news...also - are you taking a probiotic? The Candida can take over after antibiotic "treatments" (which really muck up your natural fauna and flora). Have they checked for a Candida albicans overgrowth? Do you eat much sugar? It seems that the doctors always go nuts trying to find a huge dis-ease instead of looking into the things you do every day (ummm....EAT) The last thing they're looking for is some type of food intolerance which is triggering the symptoms...

Karen
Hello, thank you for the post. I've wondered that as well. My doc said, a reaction wouldn't last this long, last year when this all started. I'm allergic to seafood, the Chicken Thai dish had a very strong fishy smell. Me and my bf, both allergic. He called the restuarant and they advised of some fish oil/seasoning that they use in all dishes regardless, that it's very strong, but they only use a dash. BF told them, well, we never smelled it before and it apparently there was a lot in it. This was prior to my ears blocking and then the swollen lips. I'll have to read on MSG. I'm not taking a probiotic, I eat a yoplait whip every other day. They have not checked me for a Candida albicans overgrowth. Maybe I should be tested? I use sugar in my decaf coffee...2 small little spoons. I'm wondering if I should follow through with an appt at the immunologist? The postive ANA result, and the edema, swelling, is being caused by some underlying issue that is going on. Is the gluten the cause of all that?
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Old 10-22-2009, 11:44 PM
t8tersalad t8tersalad is offline
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Originally Posted by can View Post
ALSO---be careful with cross-contamination and cross-reactivity. Be careful with dairy, nightshades, peanuts and soy. Try and limit all high fiber grains and legumes while the intestines are in trouble. Be careful with corn and maybe sorghum and millet. Good luck.
THank you...I am trying my darndest. Feel like I could eat for days I'm so hungry.
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