Do I Have Celiac or Am I Just CRAZY?!

[Meredith2033]

I just discovered this forum after being online searching information regarding gluten. My brain is overwhelmed with the amount of things I've read so I'd like to get honest input from people who share similar experiences. 

This is a long post but I am DESPERATE and would truly appreciate as MUCH feedback as I can get, especially from anyone with personal experience or anyone who may be a physician on here! 

I'm a 26 year old female that has had GI problems my entire life. During my childhood, I frequently missed school due to vomiting spells. I'd eat dinner, go to bed and around 3am, I'd wake up with INTENSE upper abdominal cramping. I'd vomit 5-6 times, go back to sleep and wake up around lunch feeling fine and ready to eat again. This lasted through all my elementary school years and into my early middle school years. My mom took me to a doctor who told her to keep a food diary to see what was triggering me. I remember getting very sick one night after eating macaroni and cheese and my mom reported it to my doctor who thought it could be lactose intolerance BUT I could eat cheese and ice cream and be fine. Basically, my mom, even with keeping a diary couldn't pin point EXACTLY what was causing my vomiting spells because it happened with many different types of foods.

 

Fast forward to my adulthood. I graduated high school and started college and began working as an EMT. Almost immediately after starting my career, I started having nearly constant indigestion, heartburn, abdominal pain and bloating, gas, and diarrhea. I could eat and within 30 minutes, have diarrhea and cramping and I have loose stools or diarrhea probably 3 times a day at least. Not to give TMI, but sometimes I've noticed that my stool is a yellowish-orange color and sometimes it appears to have what looks like mucous in it. 

 

I had an endoscopy done 2-3 years ago and I believe they did a biopsy and found only some mild gastritis and diagnosed me with IBS and gave me a pill to take and told me not to take it ALL the time because it could make me constipated. I never took the pill because I do have constipation as well and didn't want to make that worse so basically I've just been dealing with my issues and on the days where my stomach feels so bloated and cramps that it hurts to wear pants, I just pop a few gas pills and Ibuprofen (even though it doesn't help). 

 

A year ago while I was in school, I had gained 5 pounds and decided to eat really clean for a few weeks to get it off. Literally within 5 days, I had dropped 5 pounds, had NO cramping or bloating and had went down 3 notches in my belt loop. I DO NOT lose weight easily so I chalked it up to being mostly inflation and thats what got me to thinking that maybe my issues are caused by gluten. I just started another "self test" this week and have only eaten meats, cheese, veggies and ONLY gluten free bread and crackers and I haven't had any bloating or cramping in days. 

My main question is...is it possible to have Celiac or at the very least, a Gluten intolerance that did not show up on my endoscopy? I never had blood work to determine if I have Celiac or gluten intolerance but I find it strange that my issues almost completely resolve within days of cutting gluten out of my diet. And if anyone thinks I fit the description for either, how do I need to go about having any more testing done to figure it out and what should I tell my doctor because from what I've read, gluten problems seem to go under diagnosed. 

 

In conclusion: here are my overall, almost daily issues as well as my demographics.

Female-26 years old-current weight: 225 pounds-Height: 5'4

Frequent symptoms: Headaches (daily), abdominal bloating (daily), abdominal cramps (daily), fatigue (daily), heartburn (2 days a month), diarrhea (4 times a week), loose/soft stools (3-4 times a week), constant sinus congestion which required surgery last year but I've never been tested for allergies, Frequent sinus infections/sore throat with tonsil stones present, anxiety, ADHD (diagnosed 2 years ago and taking Adderal as needed), last 2 physicals in the last 2 years from my job showed a fatty liver but no further testing has been done to determine if its from being overweight or hereditary.

 

 

[trents]

Absolutely it is possible to have gluten intolerance and also have a negative biopsy. But do you realize that gluten intolerance is not the same as celiac disease? Gluten intolerance can produce GI distress but does not damage the mucosa and villi of the small bowel as does celiac disease. Having said that the range of symptoms you describe certainly point to celiac disease. We have many forum members who have celiac disease but had negative biopsies of the small bowel. Usually, it's because the doc doing the scoping didn't probe and biopsy in a thorough way. The damage can be patchy and may only be visible under a microscope. 

[GFinDC]

Hi Meredith,

Your symptoms do sound like possible celiac disease to me.  Alternating constipation and diarrhea were recurring symptoms for me too.

Testing for the antibodies that cause celiac damage requires us to have been eating gluten on a consistent basis prior to testing.  The circulating antibodies decline after we stop eating gluten.  If you have only been off gluten a week then  you could probably still get a valid test right now.  But every day that goes by the test reliability level falls.

You want to ask for a full or complete celiac disease panel.  Some people only test positive on one type of antibody but not the others.  Some people don't even make any IgA antibodies.  That's why they do a  a total serum IgA test.

If you get a positive anti-gliaden antibody test they often will want to do an endoscopy.  The endoscopy can take months to happen or may not happen at all due to the covid situation.

I suggest you start recording your daily symptoms and what you ate that day.  including how you feel mentally.  Celiac disease can cause nutrient deficiencies and that can affect those brain thingies and also hormones.  People also have trouble sleeping sometimes (insomnia).

You might want to stay mostly gluten-free but eat a small amount of gluten before bed.  For some people they can sleep through the worst symptoms that way.  For others a small amount of gluten in the morning or afternoon works better.  That way the antibodies stay active and your antibody testing is more reliable.

Peppermint tea is helpful for getting gas out of the stomach.  Also cutting out dairy and oats and sugar is helpful.

Welcome to the forum and to 2021 Meredith!

 

Edited January 2, 2021 by GFinDC

[DJFL77I]

firstly your weight is very unhealthy.. you need to lose a lot of weight. You are almost in the "Severely obese" category.

I highly doubt you have Celiac if you're able to maintain that amount of weight.

You only dropped 5 pounds so quickly because you stopped eating so many calories. 

[trents]

7 minutes ago, DJFL77I said:

firstly your weight is very unhealthy.. you need to lose a lot of weight. You are almost in the "Severely obese" category.

I highly doubt you have Celiac if you're able to maintain that amount of weight.

Actually, many celiacs are overweight because they instinctively eat more to compensate for poor nutrient absorption. But other celiacs are under weight and have trouble gaining for the same reason. And this can be exacerbated by poor appetite. We are all different in this regard and celiac disease can exacerbate our genetic body weight and appetite tendencies.

[Jan Meindfak]

36 minutes ago, trents said:

Actually, many celiacs are overweight because they instinctively eat more to compensate for poor nutrient absorption. But other celiacs are under weight and have trouble gaining for the same reason. And this can be exacerbated by poor appetite. We are all different in this regard and celiac disease can exacerbate our genetic body weight and appetite tendencies.

Malabsorption and weight gain do not go hand in hand too well. Before being diagnosed I ate like a pig (to make up probably, like you said) and still I was losing weight. So what you're able to eat five chocolate bars after a solid piece of pizza in one sitting, when none of it gets properly absorbed? 

[trents]

1 hour ago, Jan Meindfak said:

Malabsorption and weight gain do not go hand in hand too well. Before being diagnosed I ate like a pig (to make up probably, like you said) and still I was losing weight. So what you're able to eat five chocolate bars after a solid piece of pizza in one sitting, when none of it gets properly absorbed? 

Because the carbs and the calories still get absorbed even if the vitamins and minerals aren't being absorbed well. There are plenty of people with active celiac disease who struggle with obesity.

Edited January 2, 2021 by trents

[Posterboy]

On 12/31/2020 at 4:09 PM, Meredith2033 said:

This is a long post but I am DESPERATE and would truly appreciate as MUCH feedback as I can get, especially from anyone with personal experience or anyone who may be a physician on here! 

Meredith,

Try taking a Fat Soluble Thiamine either Benfotiamine or Allithiamine are good fat soluble B1's....

Thiamine works best when taken with Magnesium.....because Magnesium is a co-factor for Thiamine.....they BOTH together will really help your daily fatigue.

Magnesium Citrate with meals or Magnesium Glycinate are the best forms of Magnesium to take as a supplement.

Vomiting is common symptom of being low in Thiamine.

See this study from Hawaii of a person's nausea and "Intractable" vomiting that improved with IV Thiamine....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

You should be able to achieve the same with a Fat Soluble B1 in a month or two  if an undiagnosed Thiamine deficiency is your problem.....as your Chronic fatigue also points too!

Also, here are a couple other links that might help you.....

See this Cassiopaea link....notice their article entitled

When Gut Issues, SIBO & IBS-Constipation are just unrecognized thiamine deficiency:

about three articles down...

https://cassiopaea.org/forum/threads/thiamine-vitamin-b1-a-common-deficiency-in-disorders-of-energy-metabolism-cardiovascular-and-nervous-system-dysfunction.46452/page-6#:~:text=Gallbladder dyskinesia%2C a motility disorder of the gallbladder,flow%2C has also been found in thiamine deficiency.

You can also google for the hormones matter website....they have a lot of good information on thiamine...

see also my Posterboy blog post on Thiamine and why Celiac's should take it for a Season in time...

You can search for Knitty Kitty or the Posterboy on Celiac.com or Thiamine if you want to read more about it.....we have been the main champions of Thiamine because we have seen how it helped us!

I hope this is helpful but it is not medical advice.

Posterboy,

[JoaoLima]

Meredith. 

I was overweight for over 36 years, and that was one of the reasons doctors would not even consider I had celiac disease. Only after a random genetic test I was told I have the celiac gene, and even after that it was up to me to find the solution. Finally, I was diagnosed with celiac, but only after my symptoms got so bad I lost 25 kgs in 2 months. Don't wait for a answer, cut the gluten and see how you feel. And wait for a while for the improvements. It takes a while but it's totally worth it. And if you get some dark weeks at the start just endure it. Sometimes it's better for us just to take the step instead of waiting for a answer. Wish I had done the same before. 

Lima

[DJFL77I]

8 hours ago, trents said:

Because the carbs and the calories still get absorbed even if the vitamins and minerals aren't being absorbed well. There are plenty of people with active celiac disease who struggle with obesity.

my  vitamins and mineral levels are all normal yet I'm still not gaining anything yet 5 months in...

[Big Hank]

Let's see, I'll type out my best recollections and see if it helps.
I was the baby in a family of 5 boys. There was an event I can barely remember, a rushed trip to the ER after my airway closed up. Doctors called it 'croup' but now I think it could have been an auto-immune reaction. Also there were times I'd pass bright red blood in my stool.
I had been breast-fed, I also remember my mother saying I had been a big healthy baby until being weaned (and starting to eat solid foods).
As a Navy brat I had access to regular care via the VA and escaped 'failure to thrive', topping out at 75 inches in height. I was active and a good athlete, though was always nursing a break or sprain (low bone density due to malabsorption). There were what I euphemistically call 'socially embarrassing situations' due to gluten, like noxious gas and sprinting to a bathroom to avoid soiling myself.
I started working early and was successful, even joining the Army after 9-11-01. Celiac disease would have kept me out as 4-F had it been diagnosed at the time. As an adult I had pretty much adapted to Celiac disease and thought everyone suffered like I did, most people would look at you as if you were crazy if you started discussing bathroom habits with them. 
I was 39 when a doctor referred me to the doc who diagnosed and confirmed Celiac disease with a biopsy, the whole process took months. He also found a kidney stone, the chemical type associated with Celiac disease. The doctor that removed it said it was way too big to break up with concentrated sound waves and pass naturally, and he wanted to keep it so he could send it to a research facility. Hopefully it's helping advance Celiac treatments.
I went on a salad-only diet for months as I educated myself on gluten-free foods, kept working the entire time and began putting weight back on. I had gotten down to 162 lbs on a doctor's office scale my first visit to the doc who found the Celiac. One other 'symptom' that was alleviated by going gluten free was a famously short temper. A person that is usually suffering in silence simply doesn't have a lot of patience.

[trents]

6 hours ago, DJFL77I said:

my  vitamins and mineral levels are all normal yet I'm still not gaining anything yet 5 months in...

The key here is "my." Individual anecdotal experiences do not establish truth. Yes, there are many with celiac disease who lose weight or cannot put it on even when the want to. But there are many others who do not experience that.

[GodsGal]

On 12/31/2020 at 5:09 PM, Meredith2033 said:

I just discovered this forum after being online searching information regarding gluten. My brain is overwhelmed with the amount of things I've read so I'd like to get honest input from people who share similar experiences. 

This is a long post but I am DESPERATE and would truly appreciate as MUCH feedback as I can get, especially from anyone with personal experience or anyone who may be a physician on here! 

I'm a 26 year old female that has had GI problems my entire life. During my childhood, I frequently missed school due to vomiting spells. I'd eat dinner, go to bed and around 3am, I'd wake up with INTENSE upper abdominal cramping. I'd vomit 5-6 times, go back to sleep and wake up around lunch feeling fine and ready to eat again. This lasted through all my elementary school years and into my early middle school years. My mom took me to a doctor who told her to keep a food diary to see what was triggering me. I remember getting very sick one night after eating macaroni and cheese and my mom reported it to my doctor who thought it could be lactose intolerance BUT I could eat cheese and ice cream and be fine. Basically, my mom, even with keeping a diary couldn't pin point EXACTLY what was causing my vomiting spells because it happened with many different types of foods.

 

Fast forward to my adulthood. I graduated high school and started college and began working as an EMT. Almost immediately after starting my career, I started having nearly constant indigestion, heartburn, abdominal pain and bloating, gas, and diarrhea. I could eat and within 30 minutes, have diarrhea and cramping and I have loose stools or diarrhea probably 3 times a day at least. Not to give TMI, but sometimes I've noticed that my stool is a yellowish-orange color and sometimes it appears to have what looks like mucous in it. 

 

I had an endoscopy done 2-3 years ago and I believe they did a biopsy and found only some mild gastritis and diagnosed me with IBS and gave me a pill to take and told me not to take it ALL the time because it could make me constipated. I never took the pill because I do have constipation as well and didn't want to make that worse so basically I've just been dealing with my issues and on the days where my stomach feels so bloated and cramps that it hurts to wear pants, I just pop a few gas pills and Ibuprofen (even though it doesn't help). 

 

A year ago while I was in school, I had gained 5 pounds and decided to eat really clean for a few weeks to get it off. Literally within 5 days, I had dropped 5 pounds, had NO cramping or bloating and had went down 3 notches in my belt loop. I DO NOT lose weight easily so I chalked it up to being mostly inflation and thats what got me to thinking that maybe my issues are caused by gluten. I just started another "self test" this week and have only eaten meats, cheese, veggies and ONLY gluten free bread and crackers and I haven't had any bloating or cramping in days. 

My main question is...is it possible to have Celiac or at the very least, a Gluten intolerance that did not show up on my endoscopy? I never had blood work to determine if I have Celiac or gluten intolerance but I find it strange that my issues almost completely resolve within days of cutting gluten out of my diet. And if anyone thinks I fit the description for either, how do I need to go about having any more testing done to figure it out and what should I tell my doctor because from what I've read, gluten problems seem to go under diagnosed. 

 

In conclusion: here are my overall, almost daily issues as well as my demographics.

Female-26 years old-current weight: 225 pounds-Height: 5'4

Frequent symptoms: Headaches (daily), abdominal bloating (daily), abdominal cramps (daily), fatigue (daily), heartburn (2 days a month), diarrhea (4 times a week), loose/soft stools (3-4 times a week), constant sinus congestion which required surgery last year but I've never been tested for allergies, Frequent sinus infections/sore throat with tonsil stones present, anxiety, ADHD (diagnosed 2 years ago and taking Adderal as needed), last 2 physicals in the last 2 years from my job showed a fatty liver but no further testing has been done to determine if its from being overweight or hereditary.

 

 

Hi Meredith! I am not a medical professional. So, this is all from my own personal experience. I was recently diagnosed with celiac disease, and I have a dairy intolerance as well. I myself have had about 95% of your diagnoses and symptoms. So, it would definitely be something I suggest you talk to your doctor about. 

I think that it is very common to feel overwhelmed. There is a lot of information out there. And, honestly, gluten seems to be in just about every aspect of our lives. So take a breath and give yourself a little grace. 😊

Celiac disease and gluten sensitivities were not very well known when you and I were small children. I think that a lot of people fell through the cracks. When talking to your doctor, I would suggest that you mention your memories from childhood as well as your recent experiences. Does your mom still have the food diary from your childhood? Are you currently keeping a food diary? The fact that you had such a dramatic response to your diet change suggests to me that there may be something to look into.

Also, is your doctor a general practitioner or a gastroenterologist? I would consider getting a second opinion with a gastroenterologist who specializes in gluten related issues. I think that the first step would be to talk to your doctor. 

 

On 12/31/2020 at 5:09 PM, Meredith2033 said:

I just discovered this forum after being online searching information regarding gluten. My brain is overwhelmed with the amount of things I've read so I'd like to get honest input from people who share similar experiences. 

This is a long post but I am DESPERATE and would truly appreciate as MUCH feedback as I can get, especially from anyone with personal experience or anyone who may be a physician on here! 

I'm a 26 year old female that has had GI problems my entire life. During my childhood, I frequently missed school due to vomiting spells. I'd eat dinner, go to bed and around 3am, I'd wake up with INTENSE upper abdominal cramping. I'd vomit 5-6 times, go back to sleep and wake up around lunch feeling fine and ready to eat again. This lasted through all my elementary school years and into my early middle school years. My mom took me to a doctor who told her to keep a food diary to see what was triggering me. I remember getting very sick one night after eating macaroni and cheese and my mom reported it to my doctor who thought it could be lactose intolerance BUT I could eat cheese and ice cream and be fine. Basically, my mom, even with keeping a diary couldn't pin point EXACTLY what was causing my vomiting spells because it happened with many different types of foods.

 

Fast forward to my adulthood. I graduated high school and started college and began working as an EMT. Almost immediately after starting my career, I started having nearly constant indigestion, heartburn, abdominal pain and bloating, gas, and diarrhea. I could eat and within 30 minutes, have diarrhea and cramping and I have loose stools or diarrhea probably 3 times a day at least. Not to give TMI, but sometimes I've noticed that my stool is a yellowish-orange color and sometimes it appears to have what looks like mucous in it. 

 

I had an endoscopy done 2-3 years ago and I believe they did a biopsy and found only some mild gastritis and diagnosed me with IBS and gave me a pill to take and told me not to take it ALL the time because it could make me constipated. I never took the pill because I do have constipation as well and didn't want to make that worse so basically I've just been dealing with my issues and on the days where my stomach feels so bloated and cramps that it hurts to wear pants, I just pop a few gas pills and Ibuprofen (even though it doesn't help). 

 

A year ago while I was in school, I had gained 5 pounds and decided to eat really clean for a few weeks to get it off. Literally within 5 days, I had dropped 5 pounds, had NO cramping or bloating and had went down 3 notches in my belt loop. I DO NOT lose weight easily so I chalked it up to being mostly inflation and thats what got me to thinking that maybe my issues are caused by gluten. I just started another "self test" this week and have only eaten meats, cheese, veggies and ONLY gluten free bread and crackers and I haven't had any bloating or cramping in days. 

My main question is...is it possible to have Celiac or at the very least, a Gluten intolerance that did not show up on my endoscopy? I never had blood work to determine if I have Celiac or gluten intolerance but I find it strange that my issues almost completely resolve within days of cutting gluten out of my diet. And if anyone thinks I fit the description for either, how do I need to go about having any more testing done to figure it out and what should I tell my doctor because from what I've read, gluten problems seem to go under diagnosed. 

 

In conclusion: here are my overall, almost daily issues as well as my demographics.

Female-26 years old-current weight: 225 pounds-Height: 5'4

Frequent symptoms: Headaches (daily), abdominal bloating (daily), abdominal cramps (daily), fatigue (daily), heartburn (2 days a month), diarrhea (4 times a week), loose/soft stools (3-4 times a week), constant sinus congestion which required surgery last year but I've never been tested for allergies, Frequent sinus infections/sore throat with tonsil stones present, anxiety, ADHD (diagnosed 2 years ago and taking Adderal as needed), last 2 physicals in the last 2 years from my job showed a fatty liver but no further testing has been done to determine if its from being overweight or hereditary.

 

 

 

[MegaloooMama21]

Wow Meredith.

a lot of what you explained is what I have dealt with, all my life, also.

Was doing research on tonsil stones to see if it was related to celiac. Then came across your post. I was diagnosed with celiac 5 years ago.

I do not purposely ingest gluten any more and it has gotten rid of so so so many issues.(sometimes there’s cross contamination or accidental gluten ingestion, and let me tell you, once you go gluten free, and ingest gluten, you know very well there’s a problem!)

Since being an adult, I have realized more and more about my chronic health issues that my parents never seemed to care to understand. A childhood dr also told me to stop eating diary. Chronic constipation.

my biological mother also has has many issues over the years but she used to consume large amounts of alcohol, is a regular smoker, pill popper and has a terrible diet. She has had so many endoscopy’s and they’ve never found celiac disease!

but after I was diagnosed I urged her to get tested!

her levels were insanely high.

so if they were unable to identify celiac after several endoscopy’s, it’s very likely it’s just not the test you need.

there are different ways to test for celiac.

I never have had an endoscopy because when my symptoms have been at their worst and most worrying time, is when I’m pregnant and they’re unable to do much testing. They were worried for my baby and ran a ton of bloodwork.

tmi but I was incredibly sick, unable to eat or get off the floor. black diarrhea and distended belly for days.

I was shocked with the celiac diagnosis and it’s taken a long time to really understand.

Don’t give up! 

 

[Scott Adams]

This thread is a couple of years old, so Meredith may not get your reply, but welcome to the forum!

Perhaps your mother took so many pills due to her undiagnosed celiac disease? Has her health improved? I assume she went gluten-free as well, but maybe not...