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Diagnosing Celiac Disease - Questions

garlit

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garlit Newbie
garlit
Posted

I am starting to wonder whether I may have celiac disease. I have had lower back pain, neck and knee joint painf or years (I am 40 and otherwise healthy). 2 years ago I suddenly became very ill after a bout of what I believe was food poisoning. Doctors test showed nothing but symptoms are as follows. Sacroilitis, lower back pain, neck pain, stomach tenderness but only when palpated, thyroid issues, low energy, rashes and a few other things. After researching on the web whether I figured that maybe I am gluten intolerant. I suggested this to my doctor who said she didn't think so.

I have been on a gluten free diet for 3 weeks now and have seen a little improvement.

My question is does this sound like gluten intolerance because I don't have upset stomach, cramping etc.?

If so, how can I get tested for it?

Also, when you go gluten-free, how long does it take for results?

Thanks

Jane

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Nancym Enthusiast
Nancym
Posted

Do you feel stiff and sore while in bed at night? Does it get better when you get up and walk around or after you get up in the morning?

It can take people quite awhile to feel better after starting gluten free. Are you sure you're not getting hidden gluten? You might want to try an elimination diet and see if perhaps there is something else bugging you. For me, dairy, and all grains seem to be a problem. I try especially hard to avoid gluten containing ones, next would be corn. I am still eating rice bran, but not whole rice.

I suggested this to my doctor who said she didn't think so

Doctors are about 10 years out-of-date on celiac disease. If they didn't perform a blood test and endosocopy on you, then they can't rule it out.

garlit Newbie
garlit
Posted
  • Author

YES! my si joints and hips start hurting often when I get into bed and then during the night. Doesn't always keep me awake but for sure when I wake up in the morning, I feel very stiff and almost fragile (like one wrong move will trigger horrible pain).

I've been on an elimination diet for 3 weeks and was actually starting to feel better when I suddenly took a turn for the worse again end of last week.

Do you know if there is gluten in flax seeds as I take them ground up daily?

Thanks for your reply.

It's nice to know I may not be out of my mind.

PeggyV Apprentice
PeggyV
Posted
YES! my si joints and hips start hurting often when I get into bed and then during the night. Doesn't always keep me awake but for sure when I wake up in the morning, I feel very stiff and almost fragile (like one wrong move will trigger horrible pain).

I've been on an elimination diet for 3 weeks and was actually starting to feel better when I suddenly took a turn for the worse again end of last week.

Do you know if there is gluten in flax seeds as I take them ground up daily?

Thanks for your reply.

It's nice to know I may not be out of my mind.

I believe flax seed is fine. I use it all of the time.

Good Luck

Lisa Mentor
Lisa
Posted

Jane:

I had been diagnosed with IBS for many, many years and in the last three years prior to being diagnosed with Celiac, I too has chronic back pain. On three occasions, I was in bed for a week when my back "went out". I have not had a back issue since gluten free.

You have options here. You can try the diet and be totally gluten free and see what you dietary response is. This may take up to a months time to see improvements. For me I saw gradual recovery over a six month period. For all my neurogical symptoms to wain, it took almost two years and still not 100%, but close.

Secondly, you can return to a gluten diet for one months time and request some blood work done. But it is not always accurate. Your best indicator is dietary response. But, it requires you to be totally gluten free.

Hope this was helpful.

Nancym Enthusiast
Nancym
Posted
YES! my si joints and hips start hurting often when I get into bed and then during the night. Doesn't always keep me awake but for sure when I wake up in the morning, I feel very stiff and almost fragile (like one wrong move will trigger horrible pain).

I've been on an elimination diet for 3 weeks and was actually starting to feel better when I suddenly took a turn for the worse again end of last week.

Do you know if there is gluten in flax seeds as I take them ground up daily?

Thanks for your reply.

It's nice to know I may not be out of my mind.

You might have ankylosing spondylitis. I have that. It is an autoimmune disease that sometimes leads to fusing of joints in the spine/hips (but often not). The classic symptoms are pain in the SI joint, stiffness in bed that gets better when you move around, and pain in many tendons and joints. I had a lot of pain in the ribs... oddly enough. It comes in flares.

This is something you should see a rhuematologist about right away, you want to get identified early because it can lead to serious issues down the road. It can affect the lungs, heart, eyes and also the intestines. Are you male or female? Women generally have a MUCH easier time with the disease... but not always.

There's a great support web site at Open Original Shared Link

Since I've gone gluten/dairy free and gotten on some meds for the AS my own symptoms are VASTLY better. The kickas site has a lot of people doing a No-Starch diet that seems to help many of them. I eat very little starch too, I find I just seem healthier without too much starch or sugar in my diet.

Anyway, get thee to a good rhuematologist. You might want to contact the Ankylosing Spondylitis association to get the name of one or see if the kickas.org people can refer you to one in your area. It isn't always an easy disease to diagnose, most people with AS have a gene called HLA B27 but sometimes they don't.

Oh... don't forget to mention that you got the arthritis symptoms after getting food poisoning. That could be something like Ritter's Syndrome, which is another form of spondylitis.

garlit Newbie
garlit
Posted
  • Author

Hi there,

I had a test for AS (the HLA B37 you mentioned) two years ago and it was negative. They also did an mri on my si joints which came back negative. So as far as my rheumatologist is concerned, I don't have it. However, I have done a lot of reading about it as I certainly exhibit a lot of the symptoms. My problem is that if you have a doctor that doesn't agree with you or is willing to go down a different path, then you're out of luck. I'm in the process of trying to get another GP but it is very hard here in Ontario as so few doctors are accepting new patients. Thanks for your input though - I think it's certainly worth pursuing.

Jane

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Nancym Enthusiast
Nancym
Posted

There are a bunch of spondyarthropathies (ones that cause fusing). You really need a better rhuemy. There's at least one sort that is connected to food poisoning.

You can definintely have a lot of the pain and stuff and not have fusing. And of course you can be B27 negative and have it. Your doctor isn't staying current on diagnosis. My rhuemy (I lucked out with him, he's excellent) says women usually don't fuse and their symptoms exhibit more like fibromyalgia. I notice my tendons tend to have problems, I've had TMJ, a sore tendon in my forearm and problems with one in my foot.

Seriously, you need to find a support group online and find a good doctor... if you can, I know Canadians have a hard time with it.

Ack! It's Reiter's syndrome, not ritter's.

Here's an online reference: Open Original Shared Link

Another symptom I haven't had in ages: Muscle spasms. God, I'm getting so I am forgetting how miserable I felt. This is good!

My advice to you would be to cut out gluten and dairy products if you can. Dr. Fine from Enterolab has ankylosing spondylitis and recommends quite a restricted diet, one I would have a very hard time following. But I suppose it depends on how miserable I was.

If you're willing to go outside your medical system I think you can get tested by Enterolab for gluten/casein (dairy) sensitivities. The url is Open Original Shared Link

garlit Newbie
garlit
Posted
  • Author

Thanks, I just read the link you posted and it's an interesting read - yes, I need to find another rheumatologist. Actually, my doctor just phoned today with test results from knee xrays I had done on Monday. Both knees show arthritis on both sides, plus under the kneecap as well and minimal joint space and osteophytes. From reading online, it seems that arthritis can also be caused by food allergies...I shouldn't really have knee problems - I'm 40, average weight and in good shape. Oh well...I'm going shopping for some gluten free and dairy free foods!

Roger Slemmer Newbie
Roger Slemmer
Posted

I have a friend, a young mother, Mary, who is nursing her baby. The baby has GI symptoms - frequent diarrhea and slow growth rate. The baby is only nursing - not any solid food. Mary has asked me if it is possible for gluten to affect her child through her milk. I didn't think so and that is what I told her. But say Mary is Celiac and passing antibodies to her baby? Mary is asymptomatic unless it is only causing her to have depression, anxiety or emotional - psychological symptoms. I have suggested she try getting the blood test. Has anyone heard of this being possible?

I would appreciate any input on this.

Roger Slemmer

Nancym Enthusiast
Nancym
Posted

Rodger, you should start a new thread, probably in the Parenting section. Otherwise probably people won't see your question here.

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      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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    • knitty kitty
      My only proof

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