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Any Help Appreciated..


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#1 Jodster72

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Posted 19 September 2012 - 05:33 PM

Hello there, thank you in advance for taking the time to read this post.I will try to be as brief as possible so as not to put everyone to sleep. I will try to use points to explain without a novel lol

-40 year old woman
-dx with celiac via stool sample at 2 yrs of age, put on gluten-free diet
-taken off st 7 as parents toldI had grown out of it
-at 24 ended up in hospital 3 weeks with severe stomach problem and inability to keep food in
-gastro md said with history of celiac thought it was "back"
-followed gluten-free diet for 4 months until biopsy which of course came back negative/ gastro told me I didn't have it and to eat normal
-all well until first child born at age 30
-still no dx but had severe lie threatening bleeds from nose day after c-section birth that required transfusions, icu, etc
-same thing happened 7 months in to next pregnancy a year later/ exact same thing, lasted exact same time(9 days)
-all docs and specialists said they had never seen before and wouldn't let me have any more children-plagued for next 8 years with upset stomach,like a flu with burping, white coated tongue, tummy pains
-also plagued with peripheral neuropathies(MRI'S negative fo MS)
-DX with general anxiety which has been very well under control

THEN.....all heck broke loose...

I returned to work full time 2 years ago plus took a night course on top of taking care of the kidsand thei activities and the house and all you busy moms get the pic....
-noticed started getting sick all the time
-had strep for first time in life and had it 3 times in 6 months-still plagued with stomach issues


THEN ...the FUN REALLY STARTS......

September 2011........
-started with episodes of shakes, dizziness , etc
-DX with reactive hypoglycemia a few months later after suer dropping to as low as 0.7(that was first 911)
-Endo did an array of blood tests and only the reactive hypo was found
-completely gave up all forms of breads, pasta, fruit, etc last Ocober after first 911 after eating whole wheat bread
-have lost fifty plus pounds / and it keeps comig off
-I eat every couple hours, lots of dairy, meat, almonds, salads, certain veggies, all low GI index
-started having low blood pressure problems in February. Was always on low side 90/60 however now suffer with 80,s over fifties at least five days a month, seems to correlate with periods, but getting worse
-had second 911 from my office when bp must have dropped so low that adrenelan kicked in and put it at 200/something crazy
-all EKG, blood work fine
-saw Endo again and he said its not related to Endo stuff and he is stumped
-saw inter nest who specializes in cardiology who did echo and holter monitor and all that came out was extra beat and few murmurs. (he not concerned although more interested in hypo saying something is causing it
-family gp keeps getting mad because every time I see her she is telling me I have o eat whole wheat breads and pastas so I will stop losing weight but I keep telling her that the few times Ive tried even really small amounts since October of last year my sugar crashes to a crazy low and that I cant do that to my body and that she needs to figure ou why this is happening
-saw her last week and had lost another 8 pounds since 3 weeks ago and my hair is falling out so she said that either Im not eating, not eating enough , or that my body is malabsorbing everything because she said my bosy is slowly starving itself
-I once again asked her for help, so she said she will send me back to inter nest to see if he can figure out but at endos request is ordering a celiac blood test

-in meantime I took a biocard home celiac test last week and got a vey faint positive after 7 minutes( kit says even faint line is positive)
-last night went to cerliac support group where they were doing testing(biomes again) and got another very faint positive which thy said is still a positive and because I eat no breads, etc but do get gluten in a few other things woudl explain faint line
-next step is taking blood test which I feel may be negative and delay the help I really think I need

I haver sone good with the hypo since completely changing my diet, I have the odd setback usually near period again, lol but the blood pressure lows can be dehibilitating as well as the low blood pressure, occasional high heat rate(106--110)
I've dealt with all of this for what seems like forever and want to know what direction to take

Who will give me the help I need>will it be the endo? the inter nest, the gastro(the gastro doesn't think my body is stable enough to have biopsy because of the fast and hypo

Im thinking the very very faint lines area true positive and that all these weird things that they haven't een able to find cause for are from damage from celiac. I have read this week that long term damage can affect pancreas(low blood sugar) and other organs. Did I mention vision has decreased as well? I've had 3 glucose tolerance tests all negative for diabetes and positive for hypoglycemia


Will the hypo episodes go away if I go completely gluten free or could this be longterm damage? Will the blood pressure get better and back to normal when I go gluten-free as well? or are my adrenals messed up like the one doctor suggested months ago but again didn't know why

im afraid I will continue to lose weight as even though I will go gluten-free I cant jump back in to carbs or sugar because of the reactive hypo.

Im so confused and jus want my life back as it was when I didn't have to leave the house without a bunch of snacks, a blood sugar testing kit and a bp monitor.

Although I try really hard to hide fro kids they know so much has changed with mom off work the last few monhs

My office has been amazing and although I was considering returning part time in October, they want me to wait until this is all sorted out which I am silently grateful for as some days I feel a most normal again and threes days i can barely do a thing.

Anyhow I know its a lot of info but I just had to get it out lol


Im thinking with two positive biocards and a history of celiac(although stool sample) would it be safe to assume this is celiac and that all these wonderful crazy side effects will go away or get better once glten free?

Also has anyone had any experience with biocard testing??

If this incredibly long post doesn't get me kicked out of group, I look forward to your responses.

Thank you if you got this far.....


Many Blessings xo
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#2 shadowicewolf

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Posted 19 September 2012 - 06:25 PM

If you've had a history of it, i would say yes you do have it, even if it was dx'd via stool sample. As far as i see it, gluten is the main issue for all of that mess you've been going through.

Your post isn't the longest one i've seen on here, you're fine :)
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#3 pricklypear1971

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Posted 19 September 2012 - 08:14 PM

I don't have experience with bio card testing.

But if you feel better "gluten light" and have doctors telling you not to go for Endo..,I'd say stick with the doctor that will treat you as Celiac or gluten sensitive. Try for blood work ASAP, but don't delay gluten-free. Goodness.

Go gluten-free. That means all gluten. Visit the newly dx'ed threads and start reading.

http://www.celiac.co...554#entry793554

Best wishes to you and I sincerely hope this is the answer for you.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 nvsmom

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Posted 19 September 2012 - 09:17 PM

I did the Biocard test and had a very faint line too. Then I had a partial celiac panel done of IgA, ttg IgA, and EMA a couple of weeks later. The ttg IgA was over 10X normal (the test stopped at that) and my EMA was 1:40.

Those biocard tests (which is a ttg IgA test) work. You were diagnosed as a child and again now, I think that you have celiac. :(

If you are getting the celiac blood test panel from a GP, do it soon (and/or a biopsy if you want it) and then go gluten free so you can start to feel better... and I bet you'll feel much better. :)

Best wishes.
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Nicole Posted Image

"Acceptance is the key to happiness."

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Hypothyroid - August, 2012

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#5 1desperateladysaved

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Posted 20 September 2012 - 04:53 AM

I went through 30 years since beginning symptoms. I am not sure if everything can be healed up. But it sure is good to try! Welcome to the road!

Diana
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#6 IrishHeart

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Posted 20 September 2012 - 05:14 AM

"gastro md said with history of celiac thought it was "back"

whenever I read statements such as this one, I want to scream.
This GI doctor does not understand celiac at all.

If you were diagnosed as a babe with celiac and you were gluten-free and then you added gluten back into your diet and you have been sick ever since, you did not just "get celiac back". Celiac is a lifelong condition --it does not magically go away--and it requires a lifelong adherence to a gluten free diet.

"......and my hair is falling out so she said that either Im not eating, not eating enough , or that my body is malabsorbing everything because she said my bosy is slowly starving itself"

You are suffering from malabsorption. Why else would your body be starving??

Most of my hair fell out, too. The erratic blood sugars , the "adrenal fatigue", the thyroid problems--all the things you describe, I had them, too for many years-- and they all stopped for me after 15 months gluten-free.

IMHO, you are a celiac and as soon as your testing is done, you need to be strictly gluten free so you can feel better.
Start researching what you need to do to recover and follow a gluten-free diet. Time to stop the madness.

Best wishes to you.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 GFinDC

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Posted 20 September 2012 - 05:44 AM

Hi,

Great job writing up your symptoms and history. It sure sounds like celiac disease to me. However, even if it isn't going gluten-free is a great, healthy diet and can help you heal. I used to have fainting spells that doctors couldn't explain. They stopped after I quit eating soy. Celiacs can develop food intolerances to many different foods in addition to gluten ie wheat, rye, barley and possibly oats. And those other food intolerances can be very serious in their effects.

Some people with diabetes follow the gluten-free / low carb diet to help control their blood sugar. A good way to do the gluten-free diet is to avoid all processed foods and grains for a few months starting out. Gluten can hide in processed foods and it can take a while to learn the different names they use for it and learn to avoid it in processed foods. It is better to stick with whole foods that you cook yourself at home. No eating at restaurants for awhile. Also when you cook your own food you know what you are eating vs something someone else cooked. So eating food you cook yourself is safer.

Celiac is an autoimmune disease. The immune system attacks and destroys the lining of the small intestine. Which makes it hard to absorb vitamins and minerals that our bodies need to build and maintain tissues. Plus to have energy to do just about anything. The immune system is very sensitive and keeps attacking for a couple weeks following exposure. You know the immune system is sensitive because it reacts to germs so small you can't even see them with the naked eye. So very small amounts of gluten can make you sick for several weeks. Small amounts every week or two are enough to keep you sick all the time.

If you get more blood testing for celiac that is fine, but be aware the tests are often enough incorrect and can give false negatives. So it is better to try the gluten-free diet for a few months even if you get a negative. Another thing you should get tested is vitamin and mineral levels like B, D, K, iron, etc. Being low on vitamins is a sign of mal-absorption, possibly due to intestinal damage.

It can take a while to recover from celiac disease damage. It may be a back and forth road as you heal, and a rocky road is another way to describe it. Taking extra vitamins may help, but until the intestine heals they are hard to absorb. So sometimes people get vitamin shots or take sub-lingual vitamins or liquid vitamins.

Eating mostly meats, veggies, and nuts would probably be good for you. Limiting sugar and starches also. If you can give up caffeine including coffee, tea, and sodas that might help stabilize you some.

I hope you feel better soon and get started on the road to recovery.


Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 MitziG

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Posted 20 September 2012 - 06:30 AM

You have celiac now. You always have. Get in for a full celiac blood test panel, today if possible. That biocard showed anything at all when you are largely gluten-free means you had a heck of an antibody load to begin with. And yes, the little bits of gluten you are getting are enough to make you feel like total crap.

Get the bloods and biopsy asap and then go gluten-free immediately. 100% this time. Don't worry about the results, they may show it, may not. It doesn't really matter. Your life depends on recognizing your condition and treating it appropriately.

None of us can say if you will heal 100%. But many of us here also sustained a lifetime of damage and miraculously, are almost as good as new. You can definitely feel better!
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#9 Jodster72

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Posted 20 September 2012 - 08:10 AM

Thank you so much to this wonderful community for your warm and knowledgable answers. I have been gluten free for two days now but still fighting the low sugar, low blood pressure, high heart rate, etc but I am assuming a lifetime of damage doesn't go away in a week lol!!!
I am sugar free for a year with the exception of the 1 gram I get in my all natural peanut butter, and I've only drank water for one year. Not even decaf or diet sodas.
I went today for blood test and hoping it shows a positive even though I've been so scarce with gluten because there has to be some damage there from all these years. Just hoping that it picks it up so the doctor will begin my healing process with shots, meds, whatever it takes:)
I guess we all feel beat sometimes but I know with the support and kindness I will get thru this just as I will help anyone Herrera I can with my past experience and findings:)
Anyhow, many thanks and I will keep you all informed xo

Get well wishes to all:)

Jody:):)
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#10 nvsmom

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Posted 20 September 2012 - 08:33 AM

Good luck! And remeber that many of us go through a gluten-withdrawl for the first week or two, so it's possible you will feel worse before you start to feel better.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#11 jlaw

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Posted 23 September 2012 - 09:29 AM

Celiac is an autoimmune disease. The immune system attacks and destroys the lining of the small intestine. Which makes it hard to absorb vitamins and minerals that our bodies need to build and maintain tissues. Plus to have energy to do just about anything. The immune system is very sensitive and keeps attacking for a couple weeks following exposure. You know the immune system is sensitive because it reacts to germs so small you can't even see them with the naked eye. So very small amounts of gluten can make you sick for several weeks. Small amounts every week or two are enough to keep you sick all the time.


That is the best way I have heard it explained! So hard for me to get my head around why I need to be so careful with my own CC issues, so how can i expect my friends to undertand? Thankfully, they're amazing anyway, but this is a great visual picture. Thank you.
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DH dx by skin biopsy July 2012

#12 IrishHeart

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Posted 23 September 2012 - 03:19 PM

At my last checkup, my GI doctor told me he had read in a recent journal article that inflammation from a gluten exposure can last as long as 6 months.

I believe it. I have obvious symptoms for 3 weeks and do not feel quite right for a while.

The first suggestion I always offer is: try to be patient with your healing process. It is an up and down road and it takes awhile, but it happens. Best wishes.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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