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60 Years Old And Self-diagnosed


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11 replies to this topic

#1 Discovery

 
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Posted 25 January 2008 - 04:49 PM

I keep searching the Web for someone like me.....I have changed my diet after MUCH research on the Web and TOO many doctors to count....no one with any type of diagnosis that helped....just kept throwing anti-depressants at me and a weak diagnosis of CFIDS. So long story short, I started a gluten-free diet about 3 weeks ago and although in some regards feel better, still lots of exhaustion, feverish, and stomach pain, but no major symptoms like before, i.e., stomach bloating, foul gas, diarrhea, etc. My question is this, HOW LONG till this stage passes? Is there anyone out there like me who believes or knows they found out in the latter stages? I know I have suffered for years and that my father definitely suffered exactly as I do. He eventually died of colon cancer. My fear is that I am too far gone to recover. Are there things I can do to help the healing process? I am skin and bones.

thank you. help. :0
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#2 Lisa

 
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Posted 25 January 2008 - 05:35 PM

You are not too far gone unless you're six feet under! :P

Welcome,

I don't know what CFIDS is, could you fill me in?

The gluten free diet take a while to master as it can be quite complex. It also will take some time to heal, providing that gluten is your issue.

Can you expand on your symptoms and your current meds?
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 nutralady2001

 
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Posted 26 January 2008 - 07:23 PM

Yes me! I have just turned 60, read my signature line for my 47 years of mis-diagnosis...................and I am a confirmed Coeliac as of last September via endoscopy and positive antibodies

I am beginning to feel wonderful! I have been ruthless and cut out even glucose syrup from wheat (deemed "safe " by Coeliac Australia............2 parts per million gluten there fore "no detectable gluten") and any skin care/bath/cosmetics products containing gluten
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Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis
Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)
Diagnosed Hashimoto's Disease/Hypothyroid November 1994
Low B12 November 2006
Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it
Gluten free since October 2006 after failing gluten challenge
Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007
Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)
Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.
Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

#4 gfpaperdoll

 
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Posted 26 January 2008 - 11:53 PM

welcome, I am 61 & have been gluten-free for 3 1/2 years. I tested thru enterolab.com. I have two DQ1 genes, as do most of the people in my family.

It takes awhile to heal, you will I am sure make adjustments to your diet as you learn more about food. I might suggest that you also go dairy & soy free at the same time. I always say this, but it is true that it does help you heal faster, especially at our ages.

Keep reading books & learning, check into lectins read "Eat right for your blood type", read "Dangerous Grains" and the newest fave book of mine is "Good Calories Bad Calories"...
learn about the nightshade foods, many of us do not tolerate potatoes.

I gave up corn syrup two years ago, best thing I ever did for my health, upped my meat consumption & I am mostly grain free - but you will find what works best for you, just be aware that it is a journey & things will change. Keep an open mind - wow I guess that is preaching to the choir, since at your age you figured this out on your own, some people cannot do that... well a lot of people it seems, & it seems that a lot of the younger ones do not believe that the unmm, junk is the mildest adjective that I can use to describe the food that they eat, could be harming them.

I think you will be feeling much better soon.
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#5 ravenwoodglass

 
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Posted 27 January 2008 - 03:53 AM

I was cllose to death by the time I was diagnosed, if I can heal so can you. It does take a while and it does take ferreting out all possible gluten sources but you can recover. I have not come back 100% neurologically but otherwise after almost 6 years on the diet I am pretty much better than I had been since childhood.
The thing that helped me heal the fastest was going with naturally gluten free, non or minimally processed foods. I also added a sublingual B12 vitamin to help with my neuro issues.
Be sure to read as much as you can here. Be a fanatic about gluten at least at first until you know how sensitive you are. There are some things like grain derived alcohols and vinagers that some will tolerate but others won't so wait to test those until you have been gluten free for a while and then you will be able to tell if they are safe for you also.
Welcome, you have found a great resource. Ask any question you need to, no matter how silly or gross it may seem.
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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)

#6 hathor

 
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Posted 27 January 2008 - 07:22 AM

It does take time. Unfortunately, there are no definite timetables. It depends on the individual. I haven't heard anyone who has healed completely in three weeks, though, so hang in there. (Maybe the folks who heal in three weeks don't hang out on this board :D )

I assume you have a good list of ingredients that are safe, unsafe or need to be investigated further? And you know about how to avoid cross-contamination at home?

Dairy and soy seem to be problems for many. If your progress seems to stop, try eliminating them. Dairy seems to be the most common, second intolerance on this board. If you don't want to make any changes in your diet yet, you might start up a food/symptom diary and see if you feel worse after eating particular foods. Unfortunately, people may react to any number of other foods; there is no one size fits all.

A good multivitamin/mineral supplement would be useful. If you have malabsorption issues, you aren't getting enough nutrients out of what you are eating, and won't until you heal. I've read that magnesium is a particular need among those new to the diet.

I also recommend a good probiotic to help your gut develop a healthy set of bacteria.

Some people go through withdrawal from gluten, also. It may be that your symptoms are simply that and will fade on their own.

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McDougall diet (low fat vegan) since 6/00
Gluten free since 1/6/07
Soy free and completely casein and egg free since 2/15/07
Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07
Fecal Antigliladin IgA 140 (Normal Range <10 units)
Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)
Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)
Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)
Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)
Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

#7 dbmamaz

 
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Posted 27 January 2008 - 08:41 AM

Just wanted to add my experience. My symptoms were not that strong, but i did a journal entry about 3 weeks in to it, i posted a journal entry saying my digestion was much better, but i was hoping it would help my mood and energy level. A month after that, I posted saying my mood and energy were better too. I did have to get more careful about the gluten (no malt flavoring in cereal, for example). I've seen people say that an accidental glutening can leave them anxious and depressed for up to 2 weeks, too, and I am still feeling bad after a glutening last weekend. So you can definitely expect 2 steps forward and 1 step back.

good luck
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Cara - 42, mom to dd 15, ds 12, ds 4
Off gluten and dairy (and tapioca ;-( ) since 11/07
A.L.C.A.T. test showed over 50 sensitive foods
Celiac panel came back negative.
Regular allergy testing reacted to every inhalant and all but 6 foods.
Slowly adding in foods, started w 19 and now have 25

#8 Eric_C

 
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Posted 28 January 2008 - 06:22 AM

As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.

6-7 years ago I might have had an issue that went away and was replaced by something else, thinking I had solved that previous problem in reality I had just replaced it with something else.

As I cut down I went backwards through that...my current issues went away and old ones cropped up. I personally saw this as progress since issues within your body are about balance. I was getting more in balance and it just took time.

I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

So I reached a certain chemical balance to make a certain reaction happen. You'll probably see similar things, you went all the way up the ladder now you need to come back down it but that doesn't neccessarily mean your not getting better.
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#9 dbmamaz

 
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Posted 28 January 2008 - 08:16 AM

As I cut gluten from my diet before going completely free a few weeks ago what I found was I went back through problems I had in the past.. . .I used to get very bad rashes on the inside of my thights and ankles...I attributed them a few weeks ago to gluten after doing some reading. Suprisingly they went away the past 2 years...as my gluten intake went down, they came back...now they are gone completely.

Oh, I'm so glad you posted that! I was really baffled, because a weird bump showed up on my nipple, and i'd been plagued by these when i nursing 2 years ago but hadnt seemed them since, and was just kinda nervous to see it coming back, and then a rash between my breasts which hadnt bothered me in years, at least not in the winter, showed up . ..so this could be part of my progress? I hadnt even thought to connect them!
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Cara - 42, mom to dd 15, ds 12, ds 4
Off gluten and dairy (and tapioca ;-( ) since 11/07
A.L.C.A.T. test showed over 50 sensitive foods
Celiac panel came back negative.
Regular allergy testing reacted to every inhalant and all but 6 foods.
Slowly adding in foods, started w 19 and now have 25

#10 Blitz

 
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Posted 29 January 2008 - 09:15 PM

I don't know what CFIDS is, could you fill me in?


Since nobody else answered this particular inquiry, I guess I will.... :D

CFIDS = Chronic Fatigue Immune Deficiency Syndrome (aka: Chronic Fatigue Syndrome)

Cheers!

-Geoff.
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Blitz

Toronto, Canada

Diagnosed Celiac - Jan 2008

#11 pixiegirl

 
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Posted 30 January 2008 - 03:18 AM

I too was initially diagnosed with Chronic Fatigue Syndrome... it seems like a lot of us are... I'm curious if it is a complete misdiagnosis or do a lot of people with Celiac also have CFIDS?

Susan
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#12 SqueakLAG

 
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Posted 30 January 2008 - 08:40 PM

I also am self-diagnosed after a negative test, but I have in just two (2) weeks been almost completely bloat free. I was so bad that they would ask me when I was due. I hope that the gluten free diet will be the answer for me after going on three years of "we don't know". I only had one doctor (an anesthesiologist in the family) who mentioned Celiac sprue, but I didn't have clue what that was. Actually, I still am not exactly sure. What is this test you can order?
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