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Diagnosis

marciab

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marciab Enthusiast
marciab
Posted

Hi there. I have Chronic Fatigue Syndrome and Fibromyalgia. I recently went on the gluten free diet and noticed that I'm not as fatigued as I used to be. My doctor does not recommend being tested for celiac disease, since the diet is all they can do for me anyway. What do you think ? Does anyone else have CFS ?

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Merika Contributor
Merika
Posted

Hahaha, really, get tested. Really.

CFS was what my doc tried to diagnose me with 13 yrs ago. He *tried* but I didn't exactly fit his profile right, and he had nothing to offer for it, just said I had something like chronic fatigue. AFTER I then ended up in the hospital for what my friends called the "mystery illness" and -bing- 12 yrs later was diagnosed celiac. Woulda been nice to know then!!!!

I think it's important to know if you have it or not. Saying it's "just" controlled by diet is way underestimating things. If you suspected you had an infection and the doc said no big deal, we only have these pills to offer for it, you can take them for 2 weeks and see if you feel better.....would you?? Every single day??? But if he said we *know* you have an infection and you *must* take these pills every day to get better....would you??? Of course!

The diet, IMO, is hard to commit to unless you KNOW it will work. ANd what easier way to KNOW than to take a simple test? IF you have celiac, it is possible that your CFS will disappear (and was really celiac in disguise) and my guess is the fibromyalgia will improve - there are members of this list who also have that disease and can give you better stats on that than i could.

Merika

Guest nini
Guest nini
Posted

keep in mind that you would have to go back on a gluten containing diet in order for any testing to be accurate.

there are a lot of people here who have self diagnosed. I'm not one of them. I did "try" the diet years before my actual diagnosis but because I kept doubting myself I let another Dr. convince me that the diet was bad for me and my baby (I was pregnant at the time)... it took until my daughter was 3 and I was so sick I almost died before I got a real diagnosis. I find it easier to stick with the diet because I know for sure that I have Celiac.

But... you may also be one of those people who does not have Celiac but benefits from the diet. So if you decide to pursue testing and the test results are negative, you could still try the diet and see if it does help your symptoms.

I was diagnosed with fibromyalgia and cfs years before finding out about Celiac so I do believe there is a connection.

Ultimately it's up to you, but you need to be proactive and informed about your health.

marciab Enthusiast
marciab
Posted
  • Author

Thanks for the info. I understand now how important the celiac diagnosis is as a motivator to stay on the diet. I am ready to cave after only 2 weeks.

However, there is a lot of disagreement on this website about the validity of the tests. Which is what my doctor was saying.

And honestly, I'm just not ready for another ### diagnostic test or more bloodwork or doctors !!!

Guest nini
Guest nini
Posted

having a positive dx is a good motivator, BUT you can dx yourself. Stay gluten-free for a while, really give it a good effort to stay 100% gluten-free and then you may want to do a "gluten challenge" that may be the only way for you to see that when you eat gluten your body doesn't like it. Personally I believe that nobody should be eating gluten, I think it's a major contributor to many health problems. So, if there is a way that you can convince your brain that gluten is poison to your body, then you may be able to fight those urges to cave.

KaitiUSA Enthusiast
KaitiUSA
Posted

If you do get tested get back on gluten. You need to be eating quite a bit of gluten for about 3 months prior to testing for it to be accurate. Otherwise it is pointless because antibodies start to go away and your body heals.

The complete panel is very efficient in testing and pretty accurate. The tTG is the best blood test for celiac(actually going to take the place of biopsies in kids) so as you can imagine it is a very good test. Some of the blood tests are just better than the others but I think the complete panel is important to have done.

If you think having a diagnosis is the only way to keep you on the diet 100% then you need to go get tested.

If you are ok with following the diet because you know your body has something going on with gluten that is fine to but you should really be comitted to the diet because there is a chance you could have it and it is not something to mess around with.

I am sick of doctors too...thankfully I finally was able to find a good one but let me tell you some are just clueless when it comes to celiac so don't always believe everything they say.

Also, the disorders you have are commonly associated with celiac.

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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