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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Unknown Diagnosis
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6 posts in this topic

I write to ask whether anyone has any ideas on what condition I might have.

 

I have an array of symptoms which strongly resemble celiac disease, but tested negative after blood tests and a colonoscopy/endoscopy. The symptoms include chronic brain fog, fatigue, inability to concentrate, anger and anxiety issues, warts on my hands and feet, dizziness, disorientation, stiff back neck, mild seizures (while sleeping, I at times wake up and cannot control my thoughts; my eyes keep fluttering), chronic headaches, word salad, an inability to connect to people during conversation, heart palpitations, eye floaters, and too many others to name.

 

I do not know when the symptoms started, but I do know that they started to get very bad when I was a junior in college. Upon graduating college, they were absolutely awful. My friends would make fun of me suggesting I was hypoglycemic, since I always felt shaky and dizzy. I'd eat a lot of carbs when I felt that way (pizza especially), and that would take away the shaky/dizzy feeling but replace that feeling with a hangover type feeling. I was always told I am very bright, but at times I found myself reading the same simple paragraphs over and over and still not understanding them. While watching tv, I was unable to follow even simple plots or empathize with characters.

 

I am now a 29 year-old male. I have undergone a battery of tests and am out of ideas. In the past, probiotics, garlic supplements, and healthy eating have helped enormously, but as I write this I still feel depressed and unable to work (I am an attorney).

 

At times, my symptoms disappear entirely, but this is very rare. Sometimes, I grow extremely dizzy, and at the end of the dizziness spell, everything clears up as if I were never sick at all.

 

On three separate occasions, I tried a diet consisting of nothing but sweet potatoes, chicken, bell peppers, and broccoli, and felt extraordinary. But each time I cheated eating something that does not contain gluten (e.g. ice cream), and the symptoms came back. I am now on a gluten-free diet (the one I just described) and have been for over a month, but I cannot return to the same feeling of well-being I had the first times I tried this and do not understand why.

 

At one time I tried garlic supplements and again my mind cleared up. I also tried a product called Threelac and felt fantastic. But both types of supplements only worked for so long. Eventually, all of my symptoms come back.

 

When I feel free of these symptoms, I feel like an entirely different person -- confident, happy, energetic, young, intelligent, fun... My hair grows in thicker and my facial skin looks younger / more vibrant. My eyes no longer look red and look completely white. My tongue looks redder too.

 

I should also note that on two separate occasions my thyroid tested somewhat low. I am trying to get a doctor to prescribe thyroid medication now. I was previously on it for three weeks, but it had no effect, so I discontinued it.

 

Anyone have any ideas as to what this could be? Why would a sweet potato and vegetable diet work in the past, but not now? Why would garlic tablets and probiotics work?

 

Thanks in advance for any help.

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Welcome to the board. :)

 

It is possible that some of your symptoms were caused by non-celiac gluten intolerance (NCGI) if you had the full battery of tests (tTG IgA and IgG, DGP IgA and IgG, EMA IgA, total serum IgA) and the all came back fine. NCGI sufferers generally have the same symptoms as a celiac, with similar severity and sensitivity, but without the villi damage. Unfortunately not a lot is known about it and there are no tests for it - yet.  

 

To determine if gluten is the problem, a gluten-free trial is needed and unfortunately, it can take months to see good results. Being gluten-free a month is good, but you might have to take it to 6 months to reap the full benefits.I personally noticed some improvements at 1 month gluten-free but then my symptoms took a back slide and it took a few months to feel better.

 

Keep a symptom and diet journal so you can keep track of your food and trends in how you are feeling. Some improvements are so slow, you don't even notice that it happened so a journal is helpful in seeing the bigger picture.  It can also help pinpoint other foods that are causing problems like lactose/milk, soy, nightshades or even simple foods like an apple (those bother me LOL).

 

You mentioned hypothyroidism... Get it rechecked and treated if there are any abnormal tests, even some normal results aren't great. Many with thyroid issues will find that they feel best when their TSH is near a 1 (regardless of range), their free T4 and free T3 are in the 50-75% range of your lab's normal reference range, and TPO Ab is low. This does vary from person to person. I feel pretty poor when my TSH is above a 2 and my free T3 is in the bottom half of the range, but that's just me.

 

Also, thyroid T4 meds, like Synthroid, take about 6 weeks to start having a real effect. They are extremely slow to get into your system; that's why doctors make you wait 6-8 weeks after every dosage change before coming back in to retest your labs. T3 meds like cytomel will have a much quicker effect on the body; the same goes for natural desiccated thyroid (like Armour).

 

As to your question why garlic and probiotics aren't working now? My guess is that it is because it was just a bandaid; the real problem hasn't been addressed yet. You sound like you have some real chronic health issues and unless you can get to the root of it, things won't improve by much.  :(  I've been there too. I know it's incredibly frustrating.

 

If you have old labs (celiac or thyroid) feel free to share them. We might be able to help more. And ask more questions. :) Best wishes.

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Thanks for such a detailed reply! It was very helpful.

 

 

Welcome to the board. :)

 

It is possible that some of your symptoms were caused by non-celiac gluten intolerance (NCGI) if you had the full battery of tests (tTG IgA and IgG, DGP IgA and IgG, EMA IgA, total serum IgA) and the all came back fine. NCGI sufferers generally have the same symptoms as a celiac, with similar severity and sensitivity, but without the villi damage. Unfortunately not a lot is known about it and there are no tests for it - yet.  

 

To determine if gluten is the problem, a gluten-free trial is needed and unfortunately, it can take months to see good results. Being gluten-free a month is good, but you might have to take it to 6 months to reap the full benefits.I personally noticed some improvements at 1 month gluten-free but then my symptoms took a back slide and it took a few months to feel better.

 

Keep a symptom and diet journal so you can keep track of your food and trends in how you are feeling. Some improvements are so slow, you don't even notice that it happened so a journal is helpful in seeing the bigger picture.  It can also help pinpoint other foods that are causing problems like lactose/milk, soy, nightshades or even simple foods like an apple (those bother me LOL).

 

You mentioned hypothyroidism... Get it rechecked and treated if there are any abnormal tests, even some normal results aren't great. Many with thyroid issues will find that they feel best when their TSH is near a 1 (regardless of range), their free T4 and free T3 are in the 50-75% range of your lab's normal reference range, and TPO Ab is low. This does vary from person to person. I feel pretty poor when my TSH is above a 2 and my free T3 is in the bottom half of the range, but that's just me.

 

Also, thyroid T4 meds, like Synthroid, take about 6 weeks to start having a real effect. They are extremely slow to get into your system; that's why doctors make you wait 6-8 weeks after every dosage change before coming back in to retest your labs. T3 meds like cytomel will have a much quicker effect on the body; the same goes for natural desiccated thyroid (like Armour).

 

As to your question why garlic and probiotics aren't working now? My guess is that it is because it was just a bandaid; the real problem hasn't been addressed yet. You sound like you have some real chronic health issues and unless you can get to the root of it, things won't improve by much.   :(  I've been there too. I know it's incredibly frustrating.

 

If you have old labs (celiac or thyroid) feel free to share them. We might be able to help more. And ask more questions. :) Best wishes.

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I'm going to also suggest: lyme disease but not sure what would cause the warts on hands and feet-possibly an immune system problem??

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Mawk

 

Some of your symptoms remind me of mercury poisoning. Do you have Dental amalgams?

 

It might be an other poisoning, too. In the German part of ther world there was a wood preservative agent, which contained Dioxin. Although it was used in the  seventies of the last century, the timber is still evaporating Dioxin. I knew somebody who fell sick afer moving to a house, where one room (his office) had a timber-wall that had been treated with that decades ago.

 

I whish you good look to find your way out. Your symptoms could come from so much. i.e. the having to read a text several times could come from the brain fog - but it could be a symptom of a convergence deficiency of the eyes, too, which of course might again have an underlying cause.  

 

The best way to find the cause ist to listen to yourself. You know, you feel, you supect. And you will find the answers to your questions.

Edited by Thickleg
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I write to ask whether anyone has any ideas on what condition I might have.

 

I have an array of symptoms which strongly resemble celiac disease, but tested negative after blood tests and a colonoscopy/endoscopy. The symptoms include chronic brain fog, fatigue, inability to concentrate, anger and anxiety issues, warts on my hands and feet, dizziness, disorientation, stiff back neck, mild seizures (while sleeping, I at times wake up and cannot control my thoughts; my eyes keep fluttering), chronic headaches, word salad, an inability to connect to people during conversation, heart palpitations, eye floaters, and too many others to name.

 

I do not know when the symptoms started, but I do know that they started to get very bad when I was a junior in college. Upon graduating college, they were absolutely awful. My friends would make fun of me suggesting I was hypoglycemic, since I always felt shaky and dizzy. I'd eat a lot of carbs when I felt that way (pizza especially), and that would take away the shaky/dizzy feeling but replace that feeling with a hangover type feeling. I was always told I am very bright, but at times I found myself reading the same simple paragraphs over and over and still not understanding them. While watching tv, I was unable to follow even simple plots or empathize with characters.

 

I am now a 29 year-old male. I have undergone a battery of tests and am out of ideas. In the past, probiotics, garlic supplements, and healthy eating have helped enormously, but as I write this I still feel depressed and unable to work (I am an attorney).

 

At times, my symptoms disappear entirely, but this is very rare. Sometimes, I grow extremely dizzy, and at the end of the dizziness spell, everything clears up as if I were never sick at all.

 

On three separate occasions, I tried a diet consisting of nothing but sweet potatoes, chicken, bell peppers, and broccoli, and felt extraordinary. But each time I cheated eating something that does not contain gluten (e.g. ice cream), and the symptoms came back. I am now on a gluten-free diet (the one I just described) and have been for over a month, but I cannot return to the same feeling of well-being I had the first times I tried this and do not understand why.

 

At one time I tried garlic supplements and again my mind cleared up. I also tried a product called Threelac and felt fantastic. But both types of supplements only worked for so long. Eventually, all of my symptoms come back.

 

When I feel free of these symptoms, I feel like an entirely different person -- confident, happy, energetic, young, intelligent, fun... My hair grows in thicker and my facial skin looks younger / more vibrant. My eyes no longer look red and look completely white. My tongue looks redder too.

 

I should also note that on two separate occasions my thyroid tested somewhat low. I am trying to get a doctor to prescribe thyroid medication now. I was previously on it for three weeks, but it had no effect, so I discontinued it.

 

Anyone have any ideas as to what this could be? Why would a sweet potato and vegetable diet work in the past, but not now? Why would garlic tablets and probiotics work?

 

Thanks in advance for any help.

I actually have mastocytosis, which has similar symptoms to what you describe above. However, this is a VERY rare condition, so it is unlikely that you have it.   It appears that you have other symptoms which are not related to this disease.  You may have several things going on that are unrelated.  If would suggest talking to a doctor that you trust and see if he/she can help guide you through the process of trying to get to the bottom of it.  I would try a good comprehensive medical center, maybe a larger center where there are more specialists to whom you could be referred.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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