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Member Since 19 Sep 2012
Offline Last Active Sep 26 2012 05:26 AM

Topics I've Started

In Line At Lab... Quick Help Please

25 September 2012 - 12:00 PM

just saw internes. Although 60 dollar celiac blood test was negative he ordered panel whic ill be 140. Should I get it done as I'm still not eating gluten or may it puck up something the initial obe didn't? Judy not want to waste money if waste of time.




25 September 2012 - 05:11 AM

hello and good morning all:)
Just wondering if anyone as dealt with this along their journey.
Because I am obviously malabsorbing everything I have started to get dehydrated the last week. I first noticed I was very pasty in my mouth abd white tongue despite how much water I am drinking as well as my bottom eyelids are white rather than red/pink. I'm thinking this could be the reason that my heart rate as been jumping over 100 this week as well. Can anyone suggest any vitamins I could try while I wait to see doctor in a few days. They must also be sugar free as well. Any ideas would be appreciated xo
Have a great morning xo

Thank You

24 September 2012 - 05:03 PM

Just wanted to say thank you to Irish Heart for such an informative newbie 101 post!!! I'm sure it has helped so many people!!!
I keep reading an re reading it myself:) thanks so much for the lists and the positive way of thinking:)

Blood Test Negative

24 September 2012 - 06:52 AM

Hello there everyone. Well the doctors office just called and said my blood test was in normal range. They were not very familiar with the test itself but said that the normal range was less than 10 and that my level was 1.6.
I'm not that familiar but with all the signs, symptoms, etc I really thought the test would be a positive. Not to mention two positive biocard celiac tests:( they were faint positive but judged as positive . I've eaten no bread, pasta or oats for a year however hav still been getting small amounts of gluten.
This seemed like the answer to everything with the past history of celiac as a child(via stool test) and array of problems I've had last year with the reactiv hypoglycemia and adrenal fatigue. Now I think the doctor will just go back to the approach where she doesn't know what it is etc:(
Feeling very let down but hoping these blood tests can be wrong. What do you think??

Any Help Appreciated..

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


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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