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New Here And Very Frustrated!


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9 replies to this topic

#1 ChrissyInNH

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Posted 20 February 2004 - 10:14 AM

Hi!
I am new here too. I feel like I am going through the exact same thing as many of you. I am really glad I found this board. It's nice to "meet" all of you! :D

I just got my test results and they were "normal". Here's what they are:
Tissue Transglutaminase Ab was 7.0 (<20 negative)
Anti Gliadin Ab IgG 18.9 (<20 negative)
Anti Gliadin Ab IgA 11.3 (<20 negative)
Although the lab they use not very good in my opinion (Here in NH). I see a rheumatologist at Lahey in MA and they see things that my doc up here doesn't see test wise.

I have weakness, fatigue, hair loss with a psoriasis-like rash, headaches, white areas and ridges on fingernails, blurry vision, major brain fog, muscle aches, stiffness, bruise easily and more. I don't have many gastro symptoms. I am usually constipated. I only get diarrhea every now and then but when I do it just hits all of a sudden - usually when I'm shopping of course! <_<

I have other health issues. I have autoimmune thyroid (Hashimoto's) and take Levoxyl for that. I also may have Lupus or Sjogren's (have the antibodies but not diagnosed yet) and am taking Plaquenil (hydroxychloraquine) for that. I have pcos, endometriosis, hypoglycemia from too much insulin in my body, went through 6+ years of infertility and at least 2 miscarriages. (I finally had a beautiful baby boy in 2002!) I did end up with HELLP syndrome which I hear can go along with celiac. I was induced 2 weeks early and I believe I may have had gestational diabetes because my son was 8 lbs. 5.5 oz 2 weeks early.

I break out on petechiae every now and then (tiny blood spots under skin). Also, I had broken my leg a few years back rollerblading and the doc said it was strange that it happened. I had a bone scan a couple of years ago, and the tech told me it was borderline - yet my doc insists that it is normal!

Also, my niece is autistic, my sister and possibly my dad have Asperger's and I have ADD. You have probably heard the gluten connection with all of that! I have a toddler son and I am so worried about him!

I went gluten free on my 34th birthday just 3 days ago. I already feel a difference. My son and husband are going gluten free as well. My husband has IBS or something and he figured he'd try it. My son went from pooping 5x a day with soft or runny bowels to just once a day! He used to get awful diarrhea rashes. My husband also used to have BMs all of the time and he seems a little better.

This is only day 4 for us so we're still learning and testing. My husband and son are adapting well. I feel better somewhat already, but I am having some weird withdrawal symptoms. Also, I am really upset because I swear all of my docs think I'm nuts! It's a horrible feeling, but after going through so much stuff over the years, I tend to not trust my body one bit! My doctors will just do the test I ask for and then if it's normal they never try anything else. I feel like I have to bug them to get them to do anything. The only way I have found out about my problems above is through researching on my own - and of course they hate that. God forbid I try to self-diagnose. ;)

I have some questions for you all. I hope you can help me understand a few things. I'd super appreciate it!

1. Do you think the lupus meds I'm taking could have skewed my results since lupus is also autoimmune?

2. 2 days after going gluten free I had some weird symptoms. I feel almost like I have the chills. The best way to describe it is that hot/cold feeling you get when you put Ben Gay or Icy Hot on your skin. Also, my eyes have been dry and scratchy and a little crusty when I wake up (I know - yuck!).

3. We've been enjoying corn pasta, but I notice my stomach goes a little crazy after eating it. Should I not eat it for a while and try again? Maybe do rice pasta instead? (Haven't tried it yet and hoping it's not sour like the bread!)

4. Got any good bread suggestions? The rice bread is okay but I'd like something less sour.

5. Do you think I should make an appt. for a gastro down at Lahey and try again? Or should I just use enterolab? (Not sure I can afford that!)

Thanks so much in advance for your answers!!! I love this board. I am learning so much! I'm sure I'll have more things to ask. I'll try not to be too annoying. :P
Christine
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Christine
Gluten-free since 2/2004 for gluten intolerance (celiac negative)
Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.

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#2 Kim

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Posted 20 February 2004 - 11:00 AM

Hi Chrissy.

The only sure fire way to diagnose celiac disease is with a biopsy, which I would strongly recommend you (and your family) have done before you go on the gluten-free diet. I would recommend you all see a gastroenterologist -- it's well worth the money and time. Columbia University has a celiac center -- I know that's a bit far but at least you'll be dealing with experts in the disease.

I am not a doctor. I have had celiac disease 5 years, my sister has had it her whole life and 3 of her kids have it. It would be a shame to be on the gluten-free diet if you didn't have to be. If you do, then there are worse things, but at least you'll know.

As for the bread, kinnikinnick makes a very good ready-made bread (www.kinnikinnick.com) -- it's the only ready-made bread I'll eat.

Unfortunately, I have to run, but I'd be happy to answer any other questions. Good luck.

Kim.
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#3 ChrissyInNH

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Posted 21 February 2004 - 04:35 AM

Kim,

Thanks so much for replying! I am going to try that bread. I went on their web site and found some stores that carry their bread. The closest store is about an hour away, but I'm willing to travel! Then afterward maybe I'll order online.

I have an appt. the see a gastro at Lahey, but not until April - and then who knows when I could get the biopsy. I don't think I want to go back on gluten until then. If I can get a cancellation appt. then maybe that would work. The only thing is, when I am on gluten I get really bad brain fog - and I am a realtor, so brain fog is not a good thing when you're dealing with people and contracts and appointments.

I may do the Entero Lab tests - I'm not sure. Do I really need a positive test? I mean, if my doc likely won't accept the Entero Lab test results, and I know my son and I feel better on the diet - what's the point? I'm so tired of my docs just appeasing me with the tests I request, and then not trying to go any further to see what is wrong! But it seems like almost everyone here has that story. :rolleyes:

Thanks again for your post and advice on bread. I'll try it!
Christine
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Christine
Gluten-free since 2/2004 for gluten intolerance (celiac negative)
Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.

#4 SteveW

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Posted 21 February 2004 - 05:27 AM

Chrissy

I'm new to this also but I have picked up a few things over the past 3-4 months.

1 When I went gluten-free I felt worse for the first 2 weeks-Flu like symptoms-aching in all my joints on my right side only :huh: -Lot's of weird stuff was going on. When I accidentally eat Gluten I go trough this same patteren.

2 Along with Foods that contain Gluten there are many Gluten Free Foods that I can no longer tolerate after being very sick-Chicken Rice Soy Dairy Oranges-The only real starch I'm left with is Sweet Potatoes.

3 Gluten Free Breads all bother me BAD! Must be Rice Bran, Soy and Rice Flour. Along with maybe the Yeast.

4 I had Numbness (that ben gay feeling) in both my hands 6 months prior to being diagnosed with Celiac. I was told I had Tendonitis along with Cubital Tunnel Syndrome and the Doc told me that if I didn't get operated on I would lose use of my hands. I decided to give it a little time and then my GI symptoms went crazy and I lost to date 40lbs.After going gluten-free for 3 1/2 months my hands are starting to fell better. I still have the tendonitis but that I can live with.

5 I'm in NH also and as far as testing I go to Seacoast Gastro see Alan Ades MD.I like him and he is very aware of Celiac Disease and his office sends all test to a specific lab that specializes in celiac disease.I had +blood and +biopsy.

6 One other thing that I'm learning is that once I got the Celiac diagnoses I was on my own to some extent. The Doc office won't tell me what to eat and the Hospital Nutritionist gave a broad overview of celiac disease but thatís about it. Places like here and support groups are where you will get all youíre in depth info. People here are great Just because were all Celiacs we still have different foods that bother us.

Hope this helps a little
Steve
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#5 ChrissyInNH

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Posted 22 February 2004 - 03:23 PM

Steve,
Thank you for the info! I live in the Seacoast area! In fact, I work in Hampton as a Realtor.

I think I'll make an appt. with your doctor. My husband and son and I all feel better gluten-free so far. In fact my husband and son ate stuff with gluten in it at a party yesterday and they both have terrible diarrhea today. I really think something is going on here. :unsure:

Anyway, thank for writing! I appreciate it! :)
Christine
www.movingnh.com
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Christine
Gluten-free since 2/2004 for gluten intolerance (celiac negative)
Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.

#6 j9n

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Posted 23 February 2004 - 06:04 PM

Hi Christine,

I have not been diagnosed with Celiac, just a possibility since my tests were inconclusive so I am by no means very knowledgable on this subject. I do know that I tried the Adkins diet for about a week and had the same flu like symptoms, chills and pain. I wonder if it is related to not enough carbs in the diet? Maybe try healthy carbs, I would think sweet potatoes would be very good and bananas. Just a thought.

I tried corn pasta and got sick on it. I think the corn was just too much for my stomach that is trying to heal. Seemed to be hard on the digestion, I would think rice pasta is easier on the tummy.

I am having the same response about diet as Steve. My doctor told me foods are triggers not causes. He is concerned with causes at this point. I wish I knew what to eat!

Hope this helps a little bit.
Janine
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#7 judy04

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Posted 24 February 2004 - 10:39 PM

Hi everyone,

When I first went gluten-free, I got worse instead of better. I think it is
your body reacting to not receiving gluten. They say your body
craves what it is allergic to. I have always craved soft white bread,
but that "craving" went away after a few weeks. After that you start
to recognize other foods that bother you, in my case it was eggs,
milk, cheese, and just lately tomatoes. These foods are all on "hold"
right now, I hope to add them later. Also, I read that if you have a rice allergy
it will cause chills, which I had at first, but I can tolerate rice now, except
that I ate enriched rice and got sick, but I later learned it is sometimes
is sprayed with barley. hope this helps...
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#8 ChrissyInNH

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Posted 26 February 2004 - 05:55 PM

Thanks for all of the info everyone! You have all been very helpful. You know, it's weird... tonight my husband and I had pizza on rice crust. It tasted okay and all but now I have a strange feeling in my throat - like it's a little swollen and scratchy. I don't know if I'm coming down with something or if it was the pizza. I guess time will tell. I seem to tolerate the gluten-free breads okay. My favorite is the frozen rice & pecan bread that is at all of the supermarkets here (NH). It is so good toasted!

I have now been gluten-free for 9 days! I am noticing an improvement each day, especially in my muscle strength and energy. I hope it keeps up! I really do feel I have Celiac, and I feel that the medication I am on for lupus has squelched my antibodies - because that's what the meds does! I find it strange that my Anti Gliadin Ab IgG was 18.9 and positive is 20 or above. It is awfully close, and I bet if I weren't on the lupus medication it would be much higher. What a mess. ;)

My husband and son are both still gluten-free and doing great! My son has had normal BMs every day and he's gotten some great reports from school on his behavior - not that it was bad, but he's received extra kudos lately for following directions and stuff.

Thanks again everyone! I appreciate your kindness. :)
Christine
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Christine
Gluten-free since 2/2004 for gluten intolerance (celiac negative)
Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.

#9 Meenucat

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Posted 08 April 2004 - 08:41 AM

Hi Christine :D

I'm a newbie, too...Welcome!
(by the way, I'm in Maine, so I guess we're neighbors)

I can't answer any of your questions yet because I have not been diagnosed - BUT something that you wrote interested me...

You said that you have petechiae - I have questions about this - I have tiny pinprick sized red spots all over my upper arms and I was told that it was just excess blood and nothing to worry about (I was told this years ago by my then doctor) - Is this a normal occurance? My dots are always popping up...what do yours look like? (size-wise and color-wise)...also - how close are these dots spaced together?? Are they clustered or spread out?

Thanks - sorry I couldn't answer any of your questions (yet) :)
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#10 ChrissyInNH

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Posted 11 April 2004 - 05:01 PM

Hi Meenucat (neighbor!),

They are actually little blood spots and can mean that you have a low platelet count. Sometimes this can mean you have ITP which is Immune (or idiopathic) Thrombocytopenic Purpura or other autoimmune issues like lupus - but it can also be normal I'm told (but I'm not sure I believe that).

The spots are flat and under the skin. When you press something clear onto the skin (like a glass slide) the spots don't lighten. You can have one or two, or you can have hundreds. Mine show up on my shins and I've had them on my stomach area.

I hope that helps! Try looking up Immune Thrombocytopenic Purpura on the net.

Chris
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Christine
Gluten-free since 2/2004 for gluten intolerance (celiac negative)
Mom to two gluten-free, soy free, low casein boys

IgG test currently showing intolerance to: casein/dairy, egg, sugar cane, yeast, white potato, coffee, amaranth, blueberry, garlic, kidney beans, sesame, whey, banana, pineapple, pinto beans, radish. Have removed these from diet on 10/28/07.

Not showing intolerance to gluten, wheat, barley, rye, soy, rice, oats or corn at this time, but still totally gluten-free for now.


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