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Amanda L

New Here And Confused About Symptoms

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First of all, hello everyone! My name is Amanda, and I am 28 years old. I've been married for 10 years, and I have 2 wonderful kids. Michael is 9 and Bethanie is 5.

Anyway, to get to why I am here. I've always been thin (I'm 5'5" and weigh 100 pounds). I gained weight during my pregnancies, of course, but lost it right after. The only time I've ever been able to gain weight was when I had an ectopic pregnancy in 2004. I was on bedrest for a couple of months, and gained 30 pounds. (I later had surgery and 5 pounds of that was removed from my insides-TMI I know, sorry!) I'm usually borderline anemic, but honestly never really did anything about it. My diet is really crappy (I freely admit that I love me some Taco Bell!), but no matter how much fatty food I ate, I'd never gain weight. I've also had bowel problems for about the last 4-5 years or so. It started when I was pregnant with B, but I really chalked it up to hormones.

Back in June, I was getting ready to go out of town (my son played competitive baseball and we were going to a tourney about 2 hours away). The night before we left, I had REALLY bad diarrhea. This was actually pretty normal for me, as I would go back and forth from constipation to diarrhea. I took some Immodium and went on with life. The next day, we got to the ball field, and I had a hot dog. I was in the bathroom the rest of the night, and missed the last 2 games because I couldn't leave the hotel. Now, I'd had this happen before, but not that bad. I figured that it would eventually go away, and once again, I'd be constipated again. But this time that didn't happen.

In the mean time, I'm eating bland foods like rice, crackers, bread, cereals, stuff like that. My tummy wasn't really upset, just more rumbly and bloated. I got to paying attention to the diarrhea, and it was full of mucus. I even stopped eating for a couple of days to see if that helped (which it did), but when I started eating again, the diarrhea came back. I tried everything. Pepto, Immodium, Kaopectate, everything over the counter. Finally on 05 July, I went to my regular doc. She was alarmed that it had been going on this long (by then it was 5 weeks into this episode) and she wanted me to see a GI doc. She recommended Dr. J. I waited a month to get into see him, and when I went to my appointment, (still having diarrhea) he was out of town, and there would be another month's wait for another appt! I said no, and called around. I got in the next day with Dr. Y.

Got there and gave him a rundown of all my symptoms. (Don't know if this is important or not, but I have really bad acid reflux. I take 40 mg of Nexium twice a day.) He immediately said Celiac Disease. I was like huh? He wanted to put a tube down my throat and do a "flex sig," which I was told was the beginning of a colonoscopy. This was scheduled for mid September. He said that he was going to biopsy my small intestine (I think) and that would answer the celiac disease question, and the "flex sig" was just to make sure there was nothing else going on, causing the diarrhea.

Well, in mid September, I had crappy insurance, and a $1500 deductible (which had not been met), and I couldn't afford to pay the $1305 out of pocket for the procedure, so I had to cancel. We have since moved (from Arkansas to Washington state) and will be getting better health insurance on Monday, so hopefully I can have these tests done soon. But in the meantime, should I be following a celiac disease diet? I've tried, somewhat, but that darn Taco Bell calls my name. :rolleyes: Seriously, it's really hard to stay on the diet, and I hate to go to all that trouble (and expense-that food at the grocery is expensive!) for nothing, but darn it, I'm sick of being stuck at home all the time! I'm terrified to leave! And if I have to go somewhere, I don't eat. Because when I have to go, I have to go NOW (kinda like that Detrol commercial, ya know??).

Sooooo............what do ya'll think? Do I have the same symptoms ya'll have? What should I do?

Sorry this is so long, and thanks in advance!

Forgot to say, during that LONG bout with diarrhea, I lost about 10 pounds. My lowest weight was 88, I think. I'm up to about 95 now, and I am able to slow the diarrhea by taking massive doses of Pepto. Not stop it mind you, but slow it.


Amanda

Sometimes I wish someone out there would find me,

Till then I walk alone~Green Day

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Welcome.

You could be, if that is all of your symptoms but is it all of your symptoms? Do you have any other issues?

I ask because when I first posted I posted all of my symptoms that matched Celiac but didn't connect all sorts of other symptoms I was having. After all, I was in crisis because of the digestive issues but I wasn't in crisis about the other symptoms.

There is genetic testing available through Enterolab but I have never had it so I don't know so much about it, someone will be along to tell you about it.

I am of the try the diet and see if it works school but others will let you know that if you are going to have the endoscopy that you shouldn't stop eating gluten.

The diet doesn't have to be terribly expensive if you go for basic foods and skip all the processed stuff.

I'm getting sleepy and am not at my most articulate. Sorry.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Your symptoms sound very familiar. The 30-second notice D was what kept me practically trapped in my house for over a year (my family members thought I was faking or exagerating and wouldn't help me - they don't now and are great). Thank GOD for my best friend who believed every word I said and did everything she could to help, even though she works full time and has a family of her own.

Anyway...

You definitely found the right place here. This is a goldmine of information and support. Some of us are biopsy-proven or blood test-proven celiac. Others of us just tried the gluten-free diet and felt better. When I tried the gluten-free diet, my 30-second notice D, migraines and fibromyalgia-type pain all went away like somebody flipped a switch. Within a week or so too.

If you want an official diagnosis, you have to keep eating gluten. If you're having a difficult time jumping into the diet, you may need an official diagnosis just for your own piece of mind. Finding out that your body reacts so bizarrely to something as innocuous sounding as gluten (??!!!???) can bring on a phase of denial, for either you or your family members.

Welcome to the boards,

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Welcome Amanda. :)

I'm one of the ones that tested through enterolab due to being gluten very lite for 1 1/2 months.

It sounds like you may need something concrete to follow the diet. If you decide to do the biopsy it is imperative that you continue eating gluten, equivalent of 3 slices a day of bread I believe. If you decide to do the biopsy I hope they will be able to get you in soon.

Enterolab is another option. They do stool tests and you don't have to be eating gluten for them. It is a self order thing. They send you the kit, you overnight it back. Enterolab

You can also just try the diet. Gluten free means no wheat, rye, barley, spelt, and most oats. Some can handle the gluten free oats. They are not available in a lot of places that I know of though. Don't know where in Washington you are but there is a gluten free store in Vancouver called Lingonberries.

You could also do ELISA IgG testing and an intolerance may show up there. They can't tell you whether you have a lifelong intolerance though and there are a lot of false's on it for some people.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Thanks ya'll! I keep resolving that I'm going to try this diet thing, but what with the stress of moving, etc it's been hit or miss.

Don't know where in Washington you are but there is a gluten free store in Vancouver called Lingonberries.

That is right down the street from me. I see it all the time and was wondering what it was.


Amanda

Sometimes I wish someone out there would find me,

Till then I walk alone~Green Day

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That is right down the street from me. I see it all the time and was wondering what it was.

I just noticed you had Vancouver in your side bar info. Did I miss that the first time?

Lingonberries is great and the owner is super nice. :D


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Guest cassidy

Sounds pretty familiar to me. The diet is free to try and it might make you feel better. The tests are only about 50% accurate so even if you take the time and money to go through with them you may not get an accurate results and you are back to trying the diet anyway.

I also had horrible reflux. I had surgery for it when I was 10 and then I was about to have it again when I found out about celiac. I was on all of the drugs twice a day and still had no relief. I don't take anything now and the reflux only comes back when I'm glutened. When that happens I do have reflux for up to 3 weeks but apple cider vinegar of all things gets rid of it.

It is hard in the beginning to stay on the diet, however once you get to the point where you actually feel good, it isn't hard anymore. It took me two weeks to feel different at all, probably because I was glutening myself sometimes. Once I started feeling better I was 100% committed and have never been tempted to cheat.

Good luck with getting settled. This disease is emotional as well as physical so if you need a few days to get your head really to try it, then I don't think that will make a difference in the long run.

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Thanks again. I'm going to set a start date for myself and say this is IT.

I just noticed you had Vancouver in your side bar info. Did I miss that the first time?

Lingonberries is great and the owner is super nice.

I just moved here 16 days ago (but who's counting right?). So far, we love it! Although, I was getting a little worried about all that rain. Yikes, I thought I'd have to trade my car in for an ark! I'm a little bummed today because it's 80 back home (I'm from Marion, AR which is a suburb of Memphis, TN) and only 50 here. Are you from Vancouver? I'm in the Orchards area.


Amanda

Sometimes I wish someone out there would find me,

Till then I walk alone~Green Day

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Are you from Vancouver? I'm in the Orchards area.

I'm north of Vancouver about 30 minutes. Exit 27 off I-5.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I know where I 5 is! I can't find much yet, but I can find that!

Anyway, I went to Fred Meyer and picked up some wheat free/gluten free stuff. I keep telling myself that I AM going to do this.


Amanda

Sometimes I wish someone out there would find me,

Till then I walk alone~Green Day

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