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Really Need Some Input On What To Do Next


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20 replies to this topic

#1 zebaldwin

 
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Posted 07 May 2011 - 01:06 PM

First of all, I have been on this board for about 4 months now, and everyone has been nothing but help.
Here we go,
When I first heard about what celiacs was and its symptoms I was so excited. I have been sick for so long, with nothing even close to an answer.
Quick recap: my main symptoms include some digestive problems (upset stomach every morning, after some meals, etc. Bad brain fog for the last 6 or 7 months, bad/nauseous headaches almost every day for at least the last 2 years, weakness in my arms and legs, get chills easily, etc. and some other smaller symptoms. I got the blood tests for celiacs (before I went on the diet), they were negative.

I have been 100% gluten free for about 3 months now, and cannot pinpoint any positive changes. About half of that time I was dairy and soy free as well.
The brain fog is just the same (if not worse), I still get my headaches, and my digestive problems are actually worse than when I started.
I did not keep a journal of symptoms or anything, but I have sat down recently and looked back on everything and cannot see any progression.

My question for you guys...
Do I keep doing this? I feel like maybe I should spend my time, energy, and money on other options to fix how horrible I feel everyday. However, I dont want to stop if I am close. But in your opinion, wouldnt I have some kind of improvement by now? I know neurological symptoms take longer...but come on...over 3 months with nothing?

I am so hopeless and confused at this point, I just need some real-world advice and some direction.
I am a college student, graduating in 2 weeks...so I plan on using the summer to try and figure this out.

Any input on what to do, where to go, etc is more appreciated than I could ever say. I just feel like I have wasted a lot of time, and I don't want to throw all that away.
Thanks so much for everything.

Zack
  • 0
really praying that gluten is the problem...

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#2 ravenwoodglass

 
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Posted 07 May 2011 - 02:28 PM

Being gluten free is not going to effect testing for anything other than celiac so I would stick with it. Get your vitamin and mineral levels done at the very least and if you are still having GI issues do have those checked out to make sure you don't have something else going on. What are you eating and drinking? Are you eating in the caf or a lot of processed food? Since you will be done with school soon, congrats on that, perhaps after that is done go with only whole unprocessed foods and if you are still consuming soy and dairy drop those also. Neuro symptoms do take a long time to resolve. I had been sick a long time so it took me a very long time to recover, I am talking years here, but I had been very sick for over 15 years and undiagnosed celiac for 40. Are you taking any supplements? Sublingual B12 seemed to help me recover a bit faster as far as the movement issues I had goes. It was much longer before my memory issues resolved but I was very, very far advanced.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#3 rosetapper23

 
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Posted 07 May 2011 - 03:05 PM

The only thing I have to add to this discussion is, have you had your thyroid checked? How about your adrenals? I suffered from terrible brain fog, fatigue, memory problems, etc., when I was suffering from hypothyroid and didn't know it. If you test out borderline, ask your doctor to give you at least a small dosage of thyroid hormone to see if you feel any better. The normal range isn't all that normal for a lot of people.
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#4 elye

 
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Posted 07 May 2011 - 04:25 PM

Yep, I thought of thyroid issues, as well. There is also this to consider:

http://www.phac-aspc...lyme-fs-eng.php
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Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#5 GFinDC

 
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Posted 07 May 2011 - 04:59 PM

Hey Zack,

I am sorry to hear you aren't feeling better. Have you had an endoscopy to check for villi damage? An endoscopy and a colonoscopy might eliminate some possibilities at least. For the endoscopy they should take several biopsy samples from different areas to check for villi damage.

It might be a good idea to have them check for parasites also. It seems to me if you have been on a strict gluten free diet for 3 months you would have some improvement barring the possibility of casein mediated enteropathy, refractory celiac, Crohn's or some other condition. Of course there is no reason a person can't have celiac and another condition also. My younger brother had both celiac and Crohn's. If that were your situation it would be good to stay on the gluten-free diet and also seek treatment for the other condition as well.

I think it would be good idea for you to stay on the gluten-free diet anyway. It is a very healthy diet if done correctly with mostly whole foods vs processed foods. It won't hurt your body to avoid all the chemicals, food colorings, and preservatives in processed foods, especially if you are already in a weakened state from another condition.

I do think you should pursue other testing but stay on the gluten-free diet. At least until you identify what else might be going on. It is better to have a clean healthy diet when fighting a disease than a diet filled with un-natural junk that makes food last longer and sell better but is not better for your body. It is less stress on your liver to not have to detoxify all that chemical crap in modern processed foods.
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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

#6 zebaldwin

 
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Posted 08 May 2011 - 12:58 PM

Ravenwood:
I have gotten vitamins etc checked. I have a D deficiency which I am on a prescription for. But I believe that is from dropping dairy (another problem I can tie to actually going on the diet, besides losing more weight than I can give up)
I have eaten very little if any processed food over the last few months. Mostly fresh meat/veggies, coldcuts, baked beans, rice, raisins, salsa etc.
I mean, I understand that neuro symptoms take a long time...but wouldnt things be gradually better? In no way am I asking to be cured after 3 months. But there isnt even a hint of anything positive happening, that is my concern.
I know the diet wont hurt (and will only help) but eating was one of the things I really loved, and eating gluten free is extremely expensive and time consuming for me (cooking, etc). So it is incredibly hard to deal with all that and actually getting worse.
I take a B-complex, vit C, folic acid, and calcium/d every day.

Rosettaper/elye:
I have heard thyroid/adrenal issues as a possibility a lot. I am almost 100% sure I have been tested, but I am going to double check.
As far as Lyme, way back in the beginning I thought for sure thats what it was. I was actually diagnosed with it 2 years ago (but it turned out to be mono)
I have had recent tests done for Lyme, all negative. My neurologist actually wants to do a spinal tap for it...so that might be happening soon.

GfinDC:
On my list of doctors to see, a GI is next. I have not had anything done or looked at as far as stomach issues go. The neurological issues have been at the top of my list, but perhaps I should look to my stomach as the source?
I have actually thought parasites are a possibility in the past as well. I will definitely bring that up.

A question for everyone:
Would it be OK to maybe once a week just have a full (healthy) meal of whatever I want and just not worry about the gluten and everything? Like I said, if I eat gluten my symptoms are exactly the same as if I dont. And like Ive said, I actually get more of an upset stomach eating gluten free.
So, would that be OK? I feel like that would really help me a lot (in multiple ways)

Once again, thanks SO SO SO much for all your help...I can't wait to get through this......
  • 0
really praying that gluten is the problem...

#7 Mari

 
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Posted 08 May 2011 - 02:56 PM

Long before I was diagnosed with Celiac Disease I started using alternative methods of healing. I would never suggest that you stop seeing physicians, these self treatments sometimes need to be monitered. I just want to say that many people have been able to improve their brain fog and digestive issues by doing a variety of cleanses and detoxifications. These helped me survive until I was 70 and they work even better now that I'm gluten and dairy free.
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HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302
Gluten free and Cow Dairy free since 2006

#8 eatmeat4good

 
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Posted 09 May 2011 - 10:18 AM

Zack,

You can do whatever you feel is best for your body.
If you want to eat a gluten meal and you think gluten is not your problem you may certainly do that.
We cringe when people suggest that because we know the horrors of Celiac/Gluten Intolerance and we do not wish that on you. But it is your body and your life. And gluten may not be the problem.

It can take a long time to heal so do keep gluten in mind but you may have other problems and I think you are wise to think of ways to treat yourself this coming summer after you graduate.

The suggestions above regarding GI and thyroid and all the rest are good ones...but ultimately it is really up to you if you eat gluten or not. I just want to say that to you.

You are in a struggle for your health and you can fight that battle the way you see fit. I wish there were more answers for you quickly since I hear how miserable you are feeling in what you write.

I hope something presents an answer soon.
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#9 Salax

 
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Posted 09 May 2011 - 10:50 AM

I think the others have really good points and ideas. To add to it though, I am not sure 3 months is enough time to see results. I think longer is better, maybe not. There is a chance you don't have celiac disease or a gluten issue. But maybe you do.

Either way.. my first thought I had was are you sure that your 100% gluten free? Any medicines/vitamins you take? Wooden spoons, colanders, etc? I know from first hand experience going gluten free back in 2000 that I didn't feel better after 6 months, when I didn't realize the extent of where gluten was hidden. I was still eating it.

For example; the rice from El Pollo Loco. I thought, hey it's rice, there shouldn't be gluten in there. Wrong! And such continued for 6 months. Plus I was eating dairy. Dang, I felt like an idiot. <_<

So maybe cutting out dairy again might help too.

I hope you feel better. :)
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#10 zebaldwin

 
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Posted 09 May 2011 - 01:21 PM

Salax,
I have scrutinized every part of my life for gluten as much as I can...from buying all new cooking utensils, pans etc...to toothpaste, etc. I am as sure as I can be that I am 100% gluten free...but I mean, how far do I worry? Should I assume there is something I am missing or not? That is part of the problem :/

I just don't know. I have been mostly dairy free for most of the 3 months as well...

Thanks for the advice! I just wish I knew one way or the other. I have no issue not eating gluten and dairy...if it's actually doing something (or if I knew that it was)
Just discouraged and feel like I can't do anything right...especially after almost a year of dedicating my whole life to fixing this problem (whatever it is) and in the exact same place I was when I started.
  • 0
really praying that gluten is the problem...

#11 Jestgar

 
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Posted 09 May 2011 - 02:10 PM

Zack, have you thought about doing a hard core elimination diet to see if some other food is bothering you? Like.... nothing but baked chicken and brown rice for a week...
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#12 ravenwoodglass

 
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Posted 09 May 2011 - 02:26 PM

Zack, have you thought about doing a hard core elimination diet to see if some other food is bothering you? Like.... nothing but baked chicken and brown rice for a week...


I think this is great advice. Some allergists will help with one. Mine did true allergy testing first then gave me a starting point. Without this wise doctor I would be dead by now as I show up false negative on celiac blood testing.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#13 Salax

 
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Posted 09 May 2011 - 06:08 PM

Zack, have you thought about doing a hard core elimination diet to see if some other food is bothering you? Like.... nothing but baked chicken and brown rice for a week...


That would be my next thought as well. Or even the BRATS diet.
  • 0

Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#14 zebaldwin

 
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Posted 10 May 2011 - 09:54 PM

Earlier in the semester I did try to eat only fresh meat, rice, and vegetables for about 2 weeks. There was no noticeable difference.
But once I am home from school, things might be able to be more controlled, and I am willing to try everything.
Unfortunately I am going over seas for about 10 days soon after I get home...so that is going to be very hard (to do any kind of diet)

Thanks so much for the continuing help!
  • 0
really praying that gluten is the problem...

#15 zebaldwin

 
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Posted 12 May 2011 - 09:22 AM

Im just getting more and more depressed (and insanely jealous) reading of all the recent people who felt so much better after days...
I really feel like I would have felt somewhat better after months. I know I am repeating myself...but this so discouraging. I feel like I just wasted a lot of money and stress on 3 months of this :(
Dont get me wrong...I wish nothing more than for this to be my problem...but...I dont know.
I dont think Ive ever been this upset.
Sorry for the rant!
Ill probably be out of your guys hair soon :/
blah
  • 0
really praying that gluten is the problem...




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