I think I've self diagnosed myself with Celiacs???

[aCraftyStitch]

About 1-2 years ago I did the 23and me testing. It came back that I was at a slightly increased risk for celiacs. I found that interesting has I had a few prior episodes over the span of a couple years of severe stomach pain which led me to going to the ER. The ER didn't do much or have any info for me other than your gut is inflamed. On one visit they mentioned I was dehydrated and in turn tachycardic. Follow up with your doctor. I didn't have a doctor and never followed up.

Over the past year I have been suffering from dry mouth occasionally lips and even rarer but occasionally dry eyes. I at least think it's dry mouth but sometimes I wonder if it's dehydration, even though I drink 1+ gallon of water. I question myself if I am drinking the volume of water I am to elevate the dry mouth because I don't really feel thirsty per say. If I don't maintain 1+ gallons of water per day I end up with headaches which lead to brain fog. Now mind you, if I am having a really busy day and don't think to drink water I won't drink and then the next day I feel terrible.

Also in the past year I had some episodes of complete and utter exhaustion. I would just all of a sudden wake up feeling like I was on E. I wanted to do things but just couldn't muster up the energy to do so. I believe these began when I switched to a vegan diet. In speaking with my mother who has suffered from anemia in the past suggested that may be the problem. She said a quick way to tell is  if you make a fist real tight and look to see if you have red coloring in your palm. When I did this I had zero. Therefore over the past 6 months or so I've been taking an iron supplement most days of the weeks. I also stopped eating vegan. I now have color in my palms and I haven't suffered the exhaustion episodes until a couple days ago. More on that below.

Next symptom, this appeared over the last month. My calves feel crampy/tight/pressure. Am I in fact dehydrated? I wonder. One thing though is the one calve is 1/2 larger in diameter than the other and feels a little more "solid". Not sure what that's about or if it is related at all. When I walk I do notice that larger calf, just self aware of it.

I have scheduled a doctors appointment which is this Thursday. In planning for that I stopped taking my supplements b/c I want to get blood work down and didn't want to skew the numbers. I stopped the supplements about a week and a half ago. I was taking Iron, D, B12, Multivitamin, probiotic and lastly C - occasionally. On Sunday morning I woke up with the exhaustion again and it hasn't gone away. It's not at the level it was in the past (prior to taking iron). I've also noticed, per my fit bit, that my average resting heart rate is elevated by 5 bmp this past week.

I do not believe I eat that much gluten. My sources of carbs are fruit, brown rice, potatoes and occasionally old fashioned oats. I don't each much processed foods. Bread maybe 1x a week, if that. Crackers very very seldom.

Is there anything I should be asking the doctor for, in terms of blood work or just leave it up to them to test appropriately? 

Thanks in advance for any advice, feedback.

-Melissa

 

 

 

[trents]

41 minutes ago, aCraftyStitch said:

About 1-2 years ago I did the 23and me testing. It came back that I was at a slightly increased risk for celiacs. I found that interesting has I had a few prior episodes over the span of a couple years of severe stomach pain which led me to going to the ER. The ER didn't do much or have any info for me other than your gut is inflamed. On one visit they mentioned I was dehydrated and in turn tachycardic. Follow up with your doctor. I didn't have a doctor and never followed up.

Over the past year I have been suffering from dry mouth occasionally lips and even rarer but occasionally dry eyes. I at least think it's dry mouth but sometimes I wonder if it's dehydration, even though I drink 1+ gallon of water. I question myself if I am drinking the volume of water I am to elevate the dry mouth because I don't really feel thirsty per say. If I don't maintain 1+ gallons of water per day I end up with headaches which lead to brain fog. Now mind you, if I am having a really busy day and don't think to drink water I won't drink and then the next day I feel terrible.

Also in the past year I had some episodes of complete and utter exhaustion. I would just all of a sudden wake up feeling like I was on E. I wanted to do things but just couldn't muster up the energy to do so. I believe these began when I switched to a vegan diet. In speaking with my mother who has suffered from anemia in the past suggested that may be the problem. She said a quick way to tell is  if you make a fist real tight and look to see if you have red coloring in your palm. When I did this I had zero. Therefore over the past 6 months or so I've been taking an iron supplement most days of the weeks. I also stopped eating vegan. I now have color in my palms and I haven't suffered the exhaustion episodes until a couple days ago. More on that below.

Next symptom, this appeared over the last month. My calves feel crampy/tight/pressure. Am I in fact dehydrated? I wonder. One thing though is the one calve is 1/2 larger in diameter than the other and feels a little more "solid". Not sure what that's about or if it is related at all. When I walk I do notice that larger calf, just self aware of it.

I have scheduled a doctors appointment which is this Thursday. In planning for that I stopped taking my supplements b/c I want to get blood work down and didn't want to skew the numbers. I stopped the supplements about a week and a half ago. I was taking Iron, D, B12, Multivitamin, probiotic and lastly C - occasionally. On Sunday morning I woke up with the exhaustion again and it hasn't gone away. It's not at the level it was in the past (prior to taking iron). I've also noticed, per my fit bit, that my average resting heart rate is elevated by 5 bmp this past week.

I do not believe I eat that much gluten. My sources of carbs are fruit, brown rice, potatoes and occasionally old fashioned oats. I don't each much processed foods. Bread maybe 1x a week, if that. Crackers very very seldom.

Is there anything I should be asking the doctor for, in terms of blood work or just leave it up to them to test appropriately? 

Thanks in advance for any advice, feedback.

-Melissa

 

 

 

Ask the doctor to run a tTG-IGA test for celiac disease. There are other blood antibody tests that can be run but that is considered the centerpiece. For the test to be valid you would need to be eating an amount of gluten equivalent two slices of wheat bread daily for 6-8 weeks prior to the blood draw. 

[cristiana]

Hello there aCraftyStitch, and welcome!

It sounds like you have good grounds to suspect celiac disease.  I'd write in bullet points a summary of what you have written above, in case you forget some of the key details.  It will also be helpful as occasionally doctors need a bit of convincing that celiac tests are necessary!

Also, get the doctor to test your iron.  It sounds like you are anemic but it's important to be monitored when taking an iron supplement as too much can be a bad thing in time.

That is a lot of water that you are drinking.  I think I'd be sure to mention that, too.  

All the very best!

Cristiana

 

[trents]

Have you been tested for diabetes, aCraftyStitch?

[fllstuart77]

your symptoms could be absolutely anything.... 

just because you have stomach pain or inflammation ...  could simply be gastritis... 

do you have pain in your stomach or your intestines?..

how did the ER know your gut is inflamed?   you cant see inflammation on ct scans..

[cristiana]

It is true to say that you could well have gastritis.   I have that as well as coeliac disease and sometimes it's difficult to differentiate between gastritis and accidental glutening as I get burning pain in my stomach in both incidences.   So yes, that's worth your doctors looking into.  But if you are anemic, coeliac disease can definitely be a cause.

[trents]

4 hours ago, fllstuart77 said:

your symptoms could be absolutely anything.... 

just because you have stomach pain or inflammation ...  could simply be gastritis... 

do you have pain in your stomach or your intestines?..

how did the ER know your gut is inflamed?   you cant see inflammation on ct scans..

I believe you can because inflammation will increase the thickness of membrane linings.

[aCraftyStitch]

18 hours ago, trents said:

Have you been tested for diabetes, aCraftyStitch?

I've been self checking myself at home and by sugars have been normal.

5 hours ago, fllstuart77 said:

your symptoms could be absolutely anything.... 

just because you have stomach pain or inflammation ...  could simply be gastritis... 

do you have pain in your stomach or your intestines?..

how did the ER know your gut is inflamed?   you cant see inflammation on ct scans..

The did an Xray - not sure how they knew from that.

[AlwaysLearning]

I think you are smart to consider celiac or non-celiac gluten sensitivity a possible cause for your problems. Abdominal pain, edema (leg swelling), vitamin deficiencies, and fatigue are all symptoms I have experienced in reaction to consuming gluten. But they can also be symptoms of other things.

Do keep in mind that celiac is an autoimmune disease and the main symptoms are not directly caused by gluten, but are caused by your own body attacking itself. So symptoms can vary from one person to the next, and one autoimmune disease can appear to be similar to another. For instance, one person might experience arthritis after eating gluten, while another has insomnia. If you do end up deciding that celiac isn't the right diagnosis for you, an autoimmune reaction does still seem to be a likely suspect.

From what you describe, the amount of gluten you normally consume is probably not enough to ensure accurate test results. I'm not certain but I think they recommend two pieces of bread a day (or equivalent) every day for 6-8 weeks to ensure that test results are accurate. So while I'm not saying don't get tested, if the results come back negative, that might only mean that your body hasn't been exposed to enough gluten for the tests to register and you might have to do the test again after doing a gluten challenge.

Many people simply go gluten free without getting tested to see if it makes a difference in how they feel. But keep in mind that if you go this route, you may never again be able to get tested. If you do have celiac, you can expect your reactions to gluten to get much worse after going gluten free. 

But what you describe is the way that I had naturally fallen into eating before I realized that I had celiac. I had subconsciously been avoiding bread and pasta and instead going for potatoes and rice for my carbs. It was only when I had jobs where I ate a lot of grab-and-go lunches which meant more bread that I became noticeably sick. 

Good thinking on avoiding taking your vitamins so that you can get more-accurate test results for a deficiency panel. Note that iron deficiency is common for celiacs because of the malnourishment. Going gluten free was all I needed to do to fix mine permanently and not have to supplement. But a lot of vitamin deficiencies can be a sign of other things going wrong. For instance, a B12 deficiency can be a sign that your thyroid is overactive because B12 is one of the fuels your thyroid burns through. Getting that blood work done is a good way to get clues to help you figure out the correct diagnosis, but don't stop at just supplementing deficiencies.

The best advice I can give you is to not stop looking for answers just because you have a name for your ailment and know how to treat the symptoms. Instead, keeping looking for the root causes and treat those instead. 

Anyway, best of luck as you continue to look for answers! Let us know what you find out.

[aCraftyStitch]

23 hours ago, AlwaysLearning said:

I think you are smart to consider celiac or non-celiac gluten sensitivity a possible cause for your problems. Abdominal pain, edema (leg swelling), vitamin deficiencies, and fatigue are all symptoms I have experienced in reaction to consuming gluten. But they can also be symptoms of other things.

Do keep in mind that celiac is an autoimmune disease and the main symptoms are not directly caused by gluten, but are caused by your own body attacking itself. So symptoms can vary from one person to the next, and one autoimmune disease can appear to be similar to another. For instance, one person might experience arthritis after eating gluten, while another has insomnia. If you do end up deciding that celiac isn't the right diagnosis for you, an autoimmune reaction does still seem to be a likely suspect.

From what you describe, the amount of gluten you normally consume is probably not enough to ensure accurate test results. I'm not certain but I think they recommend two pieces of bread a day (or equivalent) every day for 6-8 weeks to ensure that test results are accurate. So while I'm not saying don't get tested, if the results come back negative, that might only mean that your body hasn't been exposed to enough gluten for the tests to register and you might have to do the test again after doing a gluten challenge.

Many people simply go gluten free without getting tested to see if it makes a difference in how they feel. But keep in mind that if you go this route, you may never again be able to get tested. If you do have celiac, you can expect your reactions to gluten to get much worse after going gluten free. 

But what you describe is the way that I had naturally fallen into eating before I realized that I had celiac. I had subconsciously been avoiding bread and pasta and instead going for potatoes and rice for my carbs. It was only when I had jobs where I ate a lot of grab-and-go lunches which meant more bread that I became noticeably sick. 

Good thinking on avoiding taking your vitamins so that you can get more-accurate test results for a deficiency panel. Note that iron deficiency is common for celiacs because of the malnourishment. Going gluten free was all I needed to do to fix mine permanently and not have to supplement. But a lot of vitamin deficiencies can be a sign of other things going wrong. For instance, a B12 deficiency can be a sign that your thyroid is overactive because B12 is one of the fuels your thyroid burns through. Getting that blood work done is a good way to get clues to help you figure out the correct diagnosis, but don't stop at just supplementing deficiencies.

The best advice I can give you is to not stop looking for answers just because you have a name for your ailment and know how to treat the symptoms. Instead, keeping looking for the root causes and treat those instead. 

Anyway, best of luck as you continue to look for answers! Let us know what you find out.

Thank you so much for your detailed response! I saw the doctor today. She is running the standard blood work, checking thyroid, food allergies, AIC, etc.

[trents]

15 minutes ago, aCraftyStitch said:

Thank you so much for your detailed response! I saw the doctor today. She is running the standard blood work, checking thyroid, food allergies, AIC, etc.

But is she checking for celiac disease antibodies? That is not included in a standard CBC or a CMP order.

[fllstuart77]

X rays don't see inflammation