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Insight Anyone?

blooming

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blooming Rookie
blooming
Posted

Hello everyone, I just randomly came across this sight and it seemed like a good place for some info.

Here's my story about two years ago I was diagnosed with PPD and anxiety. a couple of month later I began to have new symptoms such as, finger and tow tingling, all over pain, sharp joint pain, weekness to the point of not being able to walk, falling over. Recently my sight is starting to go. I've been diagnosed with Fibromyalgia.

Two weeks ago my doctor said to try to go Gluten free and see what happens. I had the blood work a couple of years ago and it was negative. So I've been gluten free, I think for about two weeks.

My anxiety seems to be clearing up and I seem to be thinking a bit more clearly. But my body still HURTS and my eyes are getting worse. I also don't seem to have the traditional tummy problems.

My questions would be does this sound like Celiacs to you?

Wouldn't the blood test show it?

Is it worth it for me to move on to more invasive testing?

If anyone has any thoughts I'd appreciate it.

Thank you.

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Lisa Mentor
Lisa
Posted
Hello everyone, I just randomly came across this sight and it seemed like a good place for some info.

Here's my story about two years ago I was diagnosed with PPD and anxiety. a couple of month later I began to have new symptoms such as, finger and tow tingling, all over pain, sharp joint pain, weekness to the point of not being able to walk, falling over. Recently my sight is starting to go. I've been diagnosed with Fibromyalgia.

Two weeks ago my doctor said to try to go Gluten free and see what happens. I had the blood work a couple of years ago and it was negative. So I've been gluten free, I think for about two weeks.

My anxiety seems to be clearing up and I seem to be thinking a bit more clearly. But my body still HURTS and my eyes are getting worse. I also don't seem to have the traditional tummy problems.

My questions would be does this sound like Celiacs to you?

Wouldn't the blood test show it?

Is it worth it for me to move on to more invasive testing?

If anyone has any thoughts I'd appreciate it.

Thank you.

Welcome

Some of our member are asymptomatic regarding the intestinal issue. And many more are self-diagnosed.

The Gold Standard was considered the endoscopy and biopsy to confirm celiac, but now the research is indicating the true diagnosis is positive dietary response, as testing can be inconclusive.

I was confirmed by biopsy, having no knowledge of Celiac prior.

I would recommend that you do a full blood work up and see if there are any nutritional deficencies that might contribute to your symptoms.

If you choose further testing, you must remain on a gluten diet, otherwise the testing will not be as true. If you just want to feel better without testing, continue on the gulten free diet and see what happens. For some people it's important to get a medical diagnosis. That is your choice.

You have found youself on a wonderful site. Most doctors don't have the information that these good folks have. Read from here on the posts and if the shoe fits..... ask away.

CarlaB Enthusiast
CarlaB
Posted

Lisa has good advice, especially about the vitamin deficiencies.

You should also look into Lyme. You have classic Lyme symptoms. Here are some websites:

www.ilads.org

Open Original Shared Link (they have a message board)

www.canlyme.com

and for testing www.Igenex.com

If you get tested, you need to be tested by Igenex. Other labs don't do much Lyme testing and leave out essential parts of the test. Don't be surprised if your doctor laughs at you for suggesting it ... most doctors say it doesn't exist. :blink:

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello everyone, I just randomly came across this sight and it seemed like a good place for some info.

Here's my story about two years ago I was diagnosed with PPD and anxiety. a couple of month later I began to have new symptoms such as, finger and tow tingling, all over pain, sharp joint pain, weekness to the point of not being able to walk, falling over. Recently my sight is starting to go. I've been diagnosed with Fibromyalgia.

Two weeks ago my doctor said to try to go Gluten free and see what happens. I had the blood work a couple of years ago and it was negative. So I've been gluten free, I think for about two weeks.

My anxiety seems to be clearing up and I seem to be thinking a bit more clearly. But my body still HURTS and my eyes are getting worse. I also don't seem to have the traditional tummy problems.

My questions would be does this sound like Celiacs to you?

Wouldn't the blood test show it?

Is it worth it for me to move on to more invasive testing?

If anyone has any thoughts I'd appreciate it.

Thank you.

Your symptoms mirror mine from before the daily D set in. You have a wise doctor. I would continue with the diet for a couple of months strictly and have your doctor check your B12, iron and folate levels.

It can take a bit of time for the joint and muscle pain to resolve. I had some relief within a month or so but it didn't really hit me how much until I caught myself running up the stairs one day about 6 months after diagnosis. I sat down and cryed like a baby. My 'fibro' has now been gone for 4.5 years. For the first couple it would flare with a glutening but it does not even rear it's head with CC anymore.

blooming Rookie
blooming
Posted
  • Author

Thank you so much everyone, I am writing all this down, as I see my doctor again in a couple of weeks for reevaluation and some blood work.

I'm not really sure what I'm hoping for anymore.

Everyone who deals with me and the Fibro diagnoisis just kind of shrugs ans says you have to learn to live with it. Nothing we can do.

The Celiac's on the other hand seems like it may be something I can help control.

All I know is I hate having a mystery condition.

CarlaB Enthusiast
CarlaB
Posted
Everyone who deals with me and the Fibro diagnoisis just kind of shrugs ans says you have to learn to live with it. Nothing we can do.

This is what they say about chronic Lyme, too. That is why I travel to see a specialist (an ILADS doctor) who says I can get better ... and I am. :rolleyes:

Good luck. Keep us posted.

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Fruits & Veggies

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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
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      26F!
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