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Guess How Long I've Had It!

buluga

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buluga Rookie
buluga
Posted

Just got diagnosed via a biopsy which showed "mild damage" to my intestinal villi. Doctor was 100% positive I had celiac disease. Kind of back-doored into the diagnosis because the GI Dr. was really checking my esophogus for GERD that I've had for 7 years or so, and decided while she was down there to peek around. I had the blood test on Thursday (no results yet), and just started the diet!

So I've lost 15 pounds in the last 6 months (pretty stable before then), and developed upper back pain 15 months ago that hasn't gone away despite a chiropractor and physical therapy - they said I had thoracic outlet syndrome, which is when your nerves are compressed in your shoulders and your arms fall asleep all the time - similar in symptoms to carpel tunnel, but not in physiology.

Won't see the doctor again until May, at which time I'll have the answer (or better, her guess). Given this history, what's your guess as to how long I've had active celiac disease?!!! Best guess wins...!

Also, any thoughts on the relation between celiac disease and my back and shoulder problems and/or GERD would be much appreciated!

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gf4life Enthusiast
gf4life
Posted

Well, since we don't know how old you are it is hard to guess in years, but chances are you've had it since you were a baby! It just has been causing more problems the last 10 years or so.

Welcome to the message board, and Congratulations on the diagnosis. You are now on your way to a new life of better health!

God bless,

Mariann

buluga Rookie
buluga
Posted
  • Author

I'm 31...let me know what else you need to know to make an educated guess!

gf4life Enthusiast
gf4life
Posted

Well, I'm 33 and I have had symptoms that I've known about since I was 4, and probably since I was a baby.

I would still say since you were a baby. So my guess is about 30 years!

God bless,

Mariann

KaitiUSA Enthusiast
KaitiUSA
Posted

I'm 17 and my symptoms started with mono at 14. Looking back I'm sure I had it long before even when I was healthy I notice I did have minor symptoms. It's hard to tell when you first have it though. You could have easily found out about it at a certain age but have had it well before your diagnosis.

Guest Viola
Guest Viola
Posted

Hello, welcome to the forum. I've also go Thoracic Outlet syndrome and was told it is caused by tension. Anytime I'm tense, or concentrating hard on something, especially the computer, my shoulders tend to be up. After several years of doing this, the nerves get compressed. It's hard to remember to force them down and try and relax the muscles. There's not a whole lot of treatment for it out here. I suppose massage might be good if it was kept up for a long period, but living way out here that could get expensive both in fees and gas costs for the van.

buluga Rookie
buluga
Posted
  • Author

Viola, did any doctor mention anything to you about a correlation between nutrient deficiency caused by celiac disease and your thoracic outlet syndrome? For myself, I'm wondering if a gluten-free diet will allow intestinal healing which will allow me to absorb nutrients (like B12) that are vital to nerves and muscles.

I had a full regiment of physical therapy, and it did very little. They had me working on my posture and stretching and stengthing my muscles, but it only seems midly effective, which is why I was hoping this new diagnosis was somehow related to the thoracic outlet problem (if that's what it is).

How long have you been on the diet? Would you say there is any relationship between your celiac disease and your thoracic outlet syndrome?

Thanks!

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ianm Apprentice
ianm
Posted

Welcome. I'm 37 and didn't find out what was wrong with me until I was 36. I knew something was wrong but the dozens of doctors I went to were useless and clueless.

Since going gluten-free my life has never been the same. You will be glad you've come to this group and things will be so much better from here on out.

Ianm

Guest Viola
Guest Viola
Posted

I've been on the diet for 16 years, however ... When I have an accidental gluten reaction the symptoms are most certainly worse. I think because my nervous system is really bad during a gluten reaction to the point where I get the shakes. My doctor says that all of these side diseases ... arthritis, costocontritis, phlangitis and thoracic Outlet is because they took over 30 years to diagnose the Celiac disease. All improved with the diet, however, there is now some deteriation as I get older. I'm 58 now, so I'm feeling pretty stiff some mornings.

I find a heat pad, stretching and some strength training keeps me mobile, along with some arthritis meds. When things get real bad ... usually after a gluten reaction, I resort to muscle relaxant (sp) drugs ... such as Robaxacet. That sometimes gets me over a bad time. They also help with the costocontritis. My doctor gave me a perscription muscle relaxant, but I only use that when I'm desperate as I find it makes me too sluggish.

Guest Viola
Guest Viola
Posted

Oops forgot :rolleyes: Yup ... vitamin B12 is really important. Also Folic Acid is good. I'm still on several vitamins as the damage was extensive when I was finally diagnosed and I still don't absorb as well as normal.

Having said all this ... I feel 200% better on the gluten free diet than I ever did before! :P

Lesliean Apprentice
Lesliean
Posted

Buluga-

Wanted to respond to your question about back pain and GERD. Both are very common. See Open Original Shared Link for some more of the symptoms. Osteopenia, joint and bone pain, arthritis, esophogeal reflux... Now is a time for healing the body. For the skeleton could you have a bone density x-ray to see if you have osteopenia or osteoperosis which is a common side effect of the malabsorption that goes with gluten intolerance?

My neck and back pain cleared up after 73 days GFD. When the villi of the intestines are damaged from gluten, dairy intolerance is also a result (dairy is broken down by the villi tips and until they grow back you will have bloating, gas, diarrhea). You might not have been absorbing calcium for a long time. See:

Open Original Shared Link

I am zealous about taking Citracil calcium supplements. The body can only take in 500 mg at a time and Citracil is the only calcium supplement that can be taken on an empty stomach so I take it morning, noon, afternoon, and night. Now that I can absorb calcium it is catch up time for my skeleton. And all of a sudden my back and neck pain went away. I have another bone density x-ray next year and bet it comes back normal or more normal.

I presented to my doctor with reflux. I couldn't breath, burped all the time...on and on. The stomach is upset as well as the rest of the gastrointestinal tract. See:

Open Original Shared Link

This was the first symptom to go away for me. But also the swelling in the throat went away, coughing, burping...

Any gluten will trigger your symptoms and set you back. Dairy might well be a problem for right now as well. B12 and iron are ofter lacking due to malabsorption too. Calcium supplements, B12 supplements, and a multi-vitamin with iron are worth looking into (imperative if you stop dairy).

I don't know how old you are, but Celiac is often diagnosed in adults who probably had it all along or it was triggered later. I know I had it as a child and it was asymptomatic from age 10 to 25. This is also typical. A bone density scan might tell you how long its been active based on how low your bone density is. Good luck!

Leslie

burdee Enthusiast
burdee
Posted

Hi Shirley:

I'm also 58 but went undiagnosed (or MISDIAGNOSED as 'IBS') until last year (age 57). Since I have the celiac disease gene and had lifelong gastrointestinal difficulties (irregularity, gas, bloating, indigestion, acid reflux), I'm pretty sure my symptoms first appeared around age 6 when my mom asked my doctor for a diet because she thought I was getting 'too chubby' with my bloated tummy, depite skinny arms and legs. Fortunately, I have been very active since my 20s with daily aerobic exercises and have NO musculoskeletal symptoms. My worst celiac disease symptom (excruciating abdominal pain when contaminated) made sticking to the gluten-free diet (as well as abstaining from dairy and soy) a no-brainer for me. I have also taken Vitamins B C & E for years and added magnesium and zinc more recently. Digestive enzymes and probiotics helped improve my challenged (after over 40 years of undiagnosed celiac disease) digestive system. However, I take NO prescription meds and only rarely Tylenol for occasional headaches (usually when I don't get enough sleep). Even after 11 months of TRYING to avoid gluten (9 months for dairy, 8 months for soy), my gastrointestinal system still has room for improvement. <_< Nevertheless, I'm thankful that I improved as much as I have during the past (almost) year. :)

BURDEE

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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