Looking for opinions/advice

[maxwell-jay]

Hey all,

So, I'm pretty new here. At the moment I have no diagnosis, I have an appointment with my GP in a little less than a week to bring up my concerns but I could use some opinions and/or support.

I was hospitalized for a C.Diff and EIEC infection in March of this year. I've always had an iffy stomach, not really having an appetite and vague stomach pain. However, after this hospitalization, my stomach has been even more off. I have completely lost my appetite, to the point of having to gag down food simply because i know i need to eat. It seems to just keep getting worse. I went to my college gp in early march for severe stabbing pains in my stomach and he assumed I had appendicitis and sent me to the hospital. They ran their tests and determined I did not actually have appendicitis and sent me home with anti-nausea and pain meds. This past summer i have lost a little over 10 pounds (for reference im a 5'5" guy and started the summer at 135 so i definitely did not need to lose the weight nor was i trying to...). I am almost constantly nauseas or feel this odd pressure in my upper/middle abdomen and lose stool alternating with constipation at the best of times and at the worst and I am actively afraid i will vomit and have stabbing pains in my middle abdomen followed with diarrhea. I have recently started experiencing cold sweats, i dont have a fever but im cold and sweat, i dont know if this has anything to do with my diet but i figured it worth noting. 

I tried a gluten free diet for a few days and was astounded how things changed. The first full day was still about the same, nauseas, diarrhea, loss of appetite. But, the second day i was astounded that i was actually somewhat hungry! I was so proud of myself that i actually finished a meal (I had to stop half way through, which is usual, but I actually came back to it afterwards, which i almost never do!). Everything in me wants to just stay on the gluten free diet and see if i can simply return to normalcy. However, I have an appointment with a new GP in about a week and I read that the tests are not effective if you're on a gluten free diet. So, yesterday i went back on a gluten diet and within two hours of eating I was nauseas and in pain again.

I struggle with anxiety and depression so it can be hard at times to differentiate those symptoms (such as fatigue and loss of appetite/stomach pains) from physiological problems. I went to my GP this spring for severe fatigue and was diagnosed with a vitamin D deficiency and prescribed supplements but I am still constantly fatigued, weak, and have some fantastic dark circles under my eyes. So, I ask you guys who have more experience, does this seem to fit with your experience of celiac? If so, how can i convince myself to stay on a gluten diet when i believe it is actively hurting me and making my daily life far more difficult, but I need to in order for testing to be accurate? Advice or opinions are greatly appreciated. I feel kind of stuck right now. Thanks for reading through all this and any advice you can give. 

Edited September 2, 2018 by maxwell_jay

[tessa25]

You should make an appointment with a gastroenterologist (if gp means general physician). Make sure your doctor orders the full celiac panel right away. Many docs just run the screening test which can miss many. If you're in the US and in a hurry you can go to an online site and order the blood tests yourself. I can give info on how to do it. But a gastro will order several different tests in case there are other problems as well.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

[knitty kitty]

20 hours ago, maxwell_jay said:

Hey all,

So, I'm pretty new here. At the moment I have no diagnosis, I have an appointment with my GP in a little less than a week to bring up my concerns but I could use some opinions and/or support.

I was hospitalized for a C.Diff and EIEC infection in March of this year. I've always had an iffy stomach, not really having an appetite and vague stomach pain. However, after this hospitalization, my stomach has been even more off. I have completely lost my appetite, to the point of having to gag down food simply because i know i need to eat. It seems to just keep getting worse. I went to my college gp in early march for severe stabbing pains in my stomach and he assumed I had appendicitis and sent me to the hospital. They ran their tests and determined I did not actually have appendicitis and sent me home with anti-nausea and pain meds. This past summer i have lost a little over 10 pounds (for reference im a 5'5" guy and started the summer at 135 so i definitely did not need to lose the weight nor was i trying to...). I am almost constantly nauseas or feel this odd pressure in my upper/middle abdomen and lose stool alternating with constipation at the best of times and at the worst and I am actively afraid i will vomit and have stabbing pains in my middle abdomen followed with diarrhea. I have recently started experiencing cold sweats, i dont have a fever but im cold and sweat, i dont know if this has anything to do with my diet but i figured it worth noting. 

I tried a gluten free diet for a few days and was astounded how things changed. The first full day was still about the same, nauseas, diarrhea, loss of appetite. But, the second day i was astounded that i was actually somewhat hungry! I was so proud of myself that i actually finished a meal (I had to stop half way through, which is usual, but I actually came back to it afterwards, which i almost never do!). Everything in me wants to just stay on the gluten free diet and see if i can simply return to normalcy. However, I have an appointment with a new GP in about a week and I read that the tests are not effective if you're on a gluten free diet. So, yesterday i went back on a gluten diet and within two hours of eating I was nauseas and in pain again.

I struggle with anxiety and depression so it can be hard at times to differentiate those symptoms (such as fatigue and loss of appetite/stomach pains) from physiological problems. I went to my GP this spring for severe fatigue and was diagnosed with a vitamin D deficiency and prescribed supplements but I am still constantly fatigued, weak, and have some fantastic dark circles under my eyes. So, I ask you guys who have more experience, does this seem to fit with your experience of celiac? If so, how can i convince myself to stay on a gluten diet when i believe it is actively hurting me and making my daily life far more difficult, but I need to in order for testing to be accurate? Advice or opinions are greatly appreciated. I feel kind of stuck right now. Thanks for reading through all this and any advice you can give. 

Maxwell, 

Hi! Welcome to the forum. Hope we can help though we're not doctors, but we have lots of personal experience.

I believe your GP (general practitioner) can order the Celiac Panel tests that Tessa listed.  If there are any positives, you can then go to a gastroenterologist for endoscopy and colonoscopy where samples can be taken and examined for damage and formal "gold standard" diagnosis.  

Since you already know you are deficient in vitamin D, ask to be checked for other vitamin and mineral deficiencies.  Celiacs have trouble absorbing fats, including the fat soluble vitamins A, D, E and K, and Omega 3 fatty acids needed for brain function.  The water soluble vitamins, like the complex of eight B vitamins and vitamin C, also are not absorbed well and deficiencies can occur in as little as one week especially if one has diarrhea.  Minerals, such as iron ( deficiency can cause dark under eye circles) and magnesium ( deficiency manifests as fatigue, insomnia, cramping), are often not absorbed well either. 

Common B vitamin deficiencies include B12 (which can cause fatigue, anxiety, depression, and night sweats), folate (which works with B12),  thiamine (which can affect your appetite and your mental function), and niacin (which is needed for brain and intestinal health).  Remember the eight B vitamins all work together, so if you're low in one, you still need the other B vitamins to work with it. 

Don't start supplementing any vitamins (other than your vitamin D) before testing because you won't get  accurate results.  You'll want to get your Vitamin D level up above seventy for it to really work systemically.

For motivation to stay on a gluten containing diet... 

Keep a food journal.  Write down what you eat, when, and the outcomes (diarrhea or constipation) and any psychological or physiological differences (cold sweats, pain, anxiety, panic attacks, depression, etc.).  Sometimes a food journal can identify  food allergies or intolerances.

Indulge in your favorite gluten foods keeping in mind that with a Celiac diagnosis you won't get to eat them again.  

You don't need to eat massive amounts of gluten foods. Some say as little as one slice of bread will be sufficient to produce enough  antibodies for blood panel testing.  

Cut down or remove dairy products.  Damage to the villi in the intestines makes digesting dairy products difficult.  

Limit or remove potatoes which have been scientifically proven to cause leaky gut syndrome which will exacerbate your symptoms.  

Study up on the Fasano diet and the Autoimmune Protocol Paleontology diet (AIP diet) both of which help heal your intestines.  I prefer the AIP diet for the first six months at least.  As your health improves, you can expand your diet to the Fasano diet.  

Read through the Newbie section for other insights.  

Check back in with us after your appointment to let us know the results and your progress. 

Wishing you strength on your journey.

Kitty

 

 

 

[maxwell-jay]

51 minutes ago, knitty kitty said:

Maxwell, 

Hi! Welcome to the forum. Hope we can help though we're not doctors, but we have lots of personal experience.

I believe your GP (general practitioner) can order the Celiac Panel tests that Tessa listed.  If there are any positives, you can then go to a gastroenterologist for endoscopy and colonoscopy where samples can be taken and examined for damage and formal "gold standard" diagnosis.  

Since you already know you are deficient in vitamin D, ask to be checked for other vitamin and mineral deficiencies.  Celiacs have trouble absorbing fats, including the fat soluble vitamins A, D, E and K, and Omega 3 fatty acids needed for brain function.  The water soluble vitamins, like the complex of eight B vitamins and vitamin C, also are not absorbed well and deficiencies can occur in as little as one week especially if one has diarrhea.  Minerals, such as iron ( deficiency can cause dark under eye circles) and magnesium ( deficiency manifests as fatigue, insomnia, cramping), are often not absorbed well either. 

Common B vitamin deficiencies include B12 (which can cause fatigue, anxiety, depression, and night sweats), folate (which works with B12),  thiamine (which can affect your appetite and your mental function), and niacin (which is needed for brain and intestinal health).  Remember the eight B vitamins all work together, so if you're low in one, you still need the other B vitamins to work with it. 

Don't start supplementing any vitamins (other than your vitamin D) before testing because you won't get  accurate results.  You'll want to get your Vitamin D level up above seventy for it to really work systemically.

For motivation to stay on a gluten containing diet... 

Keep a food journal.  Write down what you eat, when, and the outcomes (diarrhea or constipation) and any psychological or physiological differences (cold sweats, pain, anxiety, panic attacks, depression, etc.).  Sometimes a food journal can identify  food allergies or intolerances.

Indulge in your favorite gluten foods keeping in mind that with a Celiac diagnosis you won't get to eat them again.  

You don't need to eat massive amounts of gluten foods. Some say as little as one slice of bread will be sufficient to produce enough  antibodies for blood panel testing.  

Cut down or remove dairy products.  Damage to the villi in the intestines makes digesting dairy products difficult.  

Limit or remove potatoes which have been scientifically proven to cause leaky gut syndrome which will exacerbate your symptoms.  

Study up on the Fasano diet and the Autoimmune Protocol Paleontology diet (AIP diet) both of which help heal your intestines.  I prefer the AIP diet for the first six months at least.  As your health improves, you can expand your diet to the Fasano diet.  

Read through the Newbie section for other insights.  

Check back in with us after your appointment to let us know the results and your progress. 

Wishing you strength on your journey.

Kitty

 

 

 

Hi Kitty,

I really appreciate the information, input and support. Sometimes I feel like I'm loosing my mind and nothing is actually wrong. I'm very grateful for your post and will keep all of it in mind. I'll be sure to update here after my GP appointment.

Sincerely,

Max

[maxwell-jay]

Hey Guys,

Quick update, I saw my GP yesterday and she ordered some labs. A Celiac serology cascade, vitamin D, and Thyroid. I told her I was pretty sure my thyroid was fine since i had it tested a year ago and i remember the previous doc saying my results were normal but i wasn't going to argue since she was so willing to help. I got my results back for the second two, my vitamin D is still low so I'm going on some supplements ( I was on mega dose supplements for a while from my previous doc but it sounds like i can just take normal ones now) and my thyroid is fine, as i expected. I'm now waiting on the cascade, i know its a send out test (not done in house) since i also work in a nearby hospital lab, so i know it could take some time. I'm hoping to have results within the coming week but its entirely possible I wont know until next week. Crossing my fingers that I'll finally have an answer. Thanks again for your input guys.

-Max