Please help, is this Celiac?

[iceicebritney]

I am a 39 year old female who has been suffering with a variety of symptoms for the last 3 years. I was completely healthy with no issues prior. No allergies, very active physically and love food.

I know my case is complicated, but I’m hoping someone here can chime in with advice. I’ve seen a number of professionals who’ve all written me off as too complicated to diagnose so I truly appreciate anything from anyone!

In fall 2018, I was at a public event when all of a sudden I felt a sensation in my mid abdomen/upper stomach that felt like a drop. It was immediately followed by the urge to make a bowel movement immediately. I became anxious and ran to the bathroom. I eliminated everything I had in me via diarrhea over and over. I then began to shake all over uncontrollably with chills. Afterwards, I feel as if I’ve been poisoned. Was that anxiety, I can’t say. I went to the hospital where they did a CBC and EKG on me, gave me some fluids and told me I was fine. I must’ve just eaten something bad. I wrote it off. 
In July of 2019, I was at another public event when all of a sudden I felt that same sensation. I told myself I’m fine and tried to make it go away because I was at a social event and I didn’t want to draw attention to myself. I eventually had to give in as the urge to eliminate just kept coming. I ran to the bathroom and the events repeated from there. I went home and slept it off hoping it wouldn’t return. After all, the ER told me I was fine last time.

In September of 2019, a more serious episode occurred in the morning after my run. The urge to eliminate came on suddenly, the shaking returned, and an overwhelming sense of nausea was now present. I lived in the bathroom that day from 9:00 am until noon. The poisoned feeling went on for days after the episode to the point where I did not want to eat anything.
In November of 2019, another episode occurred the same as previously described. I went to the ER again where they made me feel like I was crazy, and just another woman with anxiety issues. My CBC came back normal. They prescribed me anti anxiety meds and sent me home. 
In January of 2020, I was overcome one evening with the worst headache I’ve ever experienced. Never had a headache in my life, and this was unbearable. Shortly after, I had another episode and felt as if I had been poisoned for days. I went weeks fearing food and afraid to put anything in my body. I made an appointment for my general doctor who told me I again have anxiety. I started taking the anti anxiety medications. I continued having episodes. 
I did not have another episode until July of 2020, but I now have a new symptom - a burning/itching rash that appears hive like all over my abdomen, chest, neck, face and scalp. Itching constantly at night, during the day and the worst when I sweat like during my run. My general doctor told me I had scabies and gave me a medication cream to put all over my body. I did and nothing changed. I went for a second opinion at another general doctor who told me it was not scabies and that I appear to be allergic to something. 
I was sent to an allergist who performed food allergy tests and skin tests on me - all negative.  The allergist began treating me for Mast Cell Activation Syndrome. I was taking 2 Allegra in the morning and 2 xyzal at night - it was a lot. Nothing changed. The rash came and went with the episodes. Then in the fall of 2020, a new symptom appeared - night sweats and trouble sleeping. I have never had a problem sleeping, but all of a sudden I couldn’t sleep or fall asleep. When I did fall asleep, I would wake up drenched in my own sweat, need to change and unable to fall back asleep.

From January 2021-July 2021, my white blood cell count continued to drop on my CBCs. They were signiciangly below “normal” and then finally in August my CBC was at 4.0 which was not taken after an episode but during a period of feeling “better than i do when I’m having an episode.” The CBCs were always drawn within 24hrs after my episodes. No one can explain why. I was sent to hematology, and they told me I do not appear to have a disease of the blood, but that I appear to have a systemic autoimmune disorder. 

The episodes continued here and there and then In July of 2021, a new symptom presented itself post diarrhea - indigestion/heartburn which I’ve never experienced before in my life. After I’d have an urge to eliminate, I’d be overwhelmed with heartburn and indigestion that lasted for days. For the record I do not feel any acid coming up my throat. However, when I went to bed at night - I’d wake up with a burning sensation in my upper stomach/chest. I am not overweight and I am very physically active. My general doctor put me on Prilosec OTC which did nothing. I was then put on Protonix and developed a dry cough/hoarse voice that occurs after I eat anything or lay down. I’ve been on the Protonix for over one month and although the indigestion/heartburn has lessened but is still present, the cough has continued without change. 

I was referred to John’s Hopkins Allergy and Immunology for Mast Cell and told I do not meet the criteria for Mast Cell. My general doctor sent me for menopause testing on my hormones - all normal. I was sent to a neurologist for migraines that I didn’t have - no blurry vision, no vomiting, no light sensitivity, and most of the time the headaches aren’t debilitating - only that one time. They did an MRI and CT scan of my brain which all were normal. I was then sent to an ENT for the headaches who told me I am perfectly healthy. I visited a Gastroenterologist for irritable Bowel hoping for some guidance and was told that my case is “above his pay grade”. They put me on Bentyl 4x a day and said the best they could do was treat my symptoms because my blood work doesn’t show a cause for a colonoscopy. I continued to have episodes while on Bentyl.
I have never been tested for celiacs but I keep pushing for it. They tell me my symptoms don’t align with celiacs, but I’m wondering if there is anyone here who can verify that? I’ve searched for celiac stories in older adults and they are hard to find. At this point, I’m just looking for any help or advice I can get because it’s been three years and the medical system has basically written me off all while I am miserable. 

Any advice or direction would be greatly appreciated as I have nowhere else to turn. Thank you in advance!

[psawyer]

Hello, and welcome to our community.

All of the symptoms you mentioned are consistent with celiac disease, although each can have other causes. I saw myself in a lot of what you said. I began seeing symptoms that I know now were celiac disease in 1995, but did not get a definitive diagnosis until 2000. For that, I had to ask my then-family doctor to test me specifically for celiac disease. He said, "It is a rare childhood illness, but if you want the test I will order it. " You can guess what happened...

[GodsGal]

1 hour ago, iceicebritney said:

I am a 39 year old female who has been suffering with a variety of symptoms for the last 3 years. I was completely healthy with no issues prior. No allergies, very active physically and love food.

I know my case is complicated, but I’m hoping someone here can chime in with advice. I’ve seen a number of professionals who’ve all written me off as too complicated to diagnose so I truly appreciate anything from anyone!

In fall 2018, I was at a public event when all of a sudden I felt a sensation in my mid abdomen/upper stomach that felt like a drop. It was immediately followed by the urge to make a bowel movement immediately. I became anxious and ran to the bathroom. I eliminated everything I had in me via diarrhea over and over. I then began to shake all over uncontrollably with chills. Afterwards, I feel as if I’ve been poisoned. Was that anxiety, I can’t say. I went to the hospital where they did a CBC and EKG on me, gave me some fluids and told me I was fine. I must’ve just eaten something bad. I wrote it off. 
In July of 2019, I was at another public event when all of a sudden I felt that same sensation. I told myself I’m fine and tried to make it go away because I was at a social event and I didn’t want to draw attention to myself. I eventually had to give in as the urge to eliminate just kept coming. I ran to the bathroom and the events repeated from there. I went home and slept it off hoping it wouldn’t return. After all, the ER told me I was fine last time.

In September of 2019, a more serious episode occurred in the morning after my run. The urge to eliminate came on suddenly, the shaking returned, and an overwhelming sense of nausea was now present. I lived in the bathroom that day from 9:00 am until noon. The poisoned feeling went on for days after the episode to the point where I did not want to eat anything.
In November of 2019, another episode occurred the same as previously described. I went to the ER again where they made me feel like I was crazy, and just another woman with anxiety issues. My CBC came back normal. They prescribed me anti anxiety meds and sent me home. 
In January of 2020, I was overcome one evening with the worst headache I’ve ever experienced. Never had a headache in my life, and this was unbearable. Shortly after, I had another episode and felt as if I had been poisoned for days. I went weeks fearing food and afraid to put anything in my body. I made an appointment for my general doctor who told me I again have anxiety. I started taking the anti anxiety medications. I continued having episodes. 
I did not have another episode until July of 2020, but I now have a new symptom - a burning/itching rash that appears hive like all over my abdomen, chest, neck, face and scalp. Itching constantly at night, during the day and the worst when I sweat like during my run. My general doctor told me I had scabies and gave me a medication cream to put all over my body. I did and nothing changed. I went for a second opinion at another general doctor who told me it was not scabies and that I appear to be allergic to something. 
I was sent to an allergist who performed food allergy tests and skin tests on me - all negative.  The allergist began treating me for Mast Cell Activation Syndrome. I was taking 2 Allegra in the morning and 2 xyzal at night - it was a lot. Nothing changed. The rash came and went with the episodes. Then in the fall of 2020, a new symptom appeared - night sweats and trouble sleeping. I have never had a problem sleeping, but all of a sudden I couldn’t sleep or fall asleep. When I did fall asleep, I would wake up drenched in my own sweat, need to change and unable to fall back asleep.

From January 2021-July 2021, my white blood cell count continued to drop on my CBCs. They were signiciangly below “normal” and then finally in August my CBC was at 4.0 which was not taken after an episode but during a period of feeling “better than i do when I’m having an episode.” The CBCs were always drawn within 24hrs after my episodes. No one can explain why. I was sent to hematology, and they told me I do not appear to have a disease of the blood, but that I appear to have a systemic autoimmune disorder. 

The episodes continued here and there and then In July of 2021, a new symptom presented itself post diarrhea - indigestion/heartburn which I’ve never experienced before in my life. After I’d have an urge to eliminate, I’d be overwhelmed with heartburn and indigestion that lasted for days. For the record I do not feel any acid coming up my throat. However, when I went to bed at night - I’d wake up with a burning sensation in my upper stomach/chest. I am not overweight and I am very physically active. My general doctor put me on Prilosec OTC which did nothing. I was then put on Protonix and developed a dry cough/hoarse voice that occurs after I eat anything or lay down. I’ve been on the Protonix for over one month and although the indigestion/heartburn has lessened but is still present, the cough has continued without change. 

I was referred to John’s Hopkins Allergy and Immunology for Mast Cell and told I do not meet the criteria for Mast Cell. My general doctor sent me for menopause testing on my hormones - all normal. I was sent to a neurologist for migraines that I didn’t have - no blurry vision, no vomiting, no light sensitivity, and most of the time the headaches aren’t debilitating - only that one time. They did an MRI and CT scan of my brain which all were normal. I was then sent to an ENT for the headaches who told me I am perfectly healthy. I visited a Gastroenterologist for irritable Bowel hoping for some guidance and was told that my case is “above his pay grade”. They put me on Bentyl 4x a day and said the best they could do was treat my symptoms because my blood work doesn’t show a cause for a colonoscopy. I continued to have episodes while on Bentyl.
I have never been tested for celiacs but I keep pushing for it. They tell me my symptoms don’t align with celiacs, but I’m wondering if there is anyone here who can verify that? I’ve searched for celiac stories in older adults and they are hard to find. At this point, I’m just looking for any help or advice I can get because it’s been three years and the medical system has basically written me off all while I am miserable. 

Any advice or direction would be greatly appreciated as I have nowhere else to turn. Thank you in advance!

Hi! Welcome!

I'm not a medical professional, so please don't take this as a diagnosis or medical advice. It could be celiac disease. But it could also be something else. 

I would keep asking for the test. Would you be able to see a different gastroenterologist for a second opinion? You mentioned a rash. Have you seen a dermatologist?

I hope you get some answers soon! 

[iceicebritney]

8 hours ago, GodsGal said:

Hi! Welcome!

I'm not a medical professional, so please don't take this as a diagnosis or medical advice. It could be celiac disease. But it could also be something else. 

I would keep asking for the test. Would you be able to see a different gastroenterologist for a second opinion? You mentioned a rash. Have you seen a dermatologist?

I hope you get some answers soon! 

Thank you so much! I really appreciate you taking the time to respond. I have thought about a second Gastro, so perhaps I should go in that direction. I am very unhappy with the treatment and attitude I received from the first one who was recommended by a friend with Crohn's - so I was shocked. I’ll look into this, thank you for the suggestion.

the rash is hard because it’s not an every single day thing. Sometimes it lasts for a few days, and sometimes it lasts for weeks. I have tried to show Hopkins the rash, but it’s never present in my physical appointments. All during COVID, I had it off and on and tried to share it on my video visits but they said it was too hard to see. I took photos, saved them on my phone, and emailed them last week but haven’t heard back. I could make a dermatology appointment, but I’m afraid by the time I am seen I won’t have the rash.

[iceicebritney]

9 hours ago, psawyer said:

Hello, and welcome to our community.

All of the symptoms you mentioned are consistent with celiac disease, although each can have other causes. I saw myself in a lot of what you said. I began seeing symptoms that I know now were celiac disease in 1995, but did not get a definitive diagnosis until 2000. For that, I had to ask my then-family doctor to test me specifically for celiac disease. He said, "It is a rare childhood illness, but if you want the test I will order it. " You can guess what happened...

Thank you so much for your reply. I have also heard the same from my general doctor who says I can’t get celiacs as an adult - after reading your post and then some others on the internet it appears you can in fact. I called again last evening to request a celiac blood test atleast. My problem is, if I can’t get a doctor onboard with the endoscopy test - I don’t think I can have it/have my insurance cover it. I’ve been so disappointed with our health care system and the so-called medical professionals who have been treating me. My father says they’re practicing witch craft and not medicine because all they want to do is prescribe me drugs to treat my symptoms which isn’t fixing the root problem that continues to cause these episodes. I just don’t know where to turn, so I thank you for your response as I don’t feel so alone and lost anymore.

[MJ Crowley]

Dear IIBritney,  I was diagnosed a little over one year ago (at age 76) and now realized I suffered symptoms for well over 15 years...so it's not just a "childhood" disease.  And, yes, a couple GI doctors did not bother to check for celiac.  One thing I did last year was ask for a genetic test. (if Dr refuses you can do a 23andme yourself)  ( I did both).  I only have one gene but who knows what or when it was triggered, as I ate gluten for 75 years.  I am also very active and always ate a healthy diet.  One plus year off gluten and I feel so good, I would never go back.

[Kate M]

Britney, 

Your issues sound all to familiar. I was diagnosed as an adult (age 29) after almost a year of blood work & testing every couple of weeks, and me pleading with doctors for more tests. I’ve always had mild allergies to some foods & low iron, and even as a toddler it was noted, but I was given iron supplements & my doctors just asked if I was Mediterranean over & over.

I had been continuously altering my diet for years at my diagnosis - things like stop eating meat (for almost 7 years), or I only ate whole grains & wheat - wondering if my body just couldn’t digest properly and needed more fibrous foods after starting to eat meat again. I took Prilosec for years & had multiple GI studies done for severe acid reflux. I had scans completed to see if I had obstruction in my bowels or tumors on my stomach. I had low abdominal pain complaints - so I also had ultrasounds completed by my OB/GYN. 

When I finally got to a gastroenterologist who would listen, he asked if I was Mediterranean (no) or Irish (yes)... I told him of my issues that had been plaguing me for the better part of almost 2 years at that point... Diarrhea immediately after every meal, stomach pain & cramping that had me in tears in the fetal position on the floor for hours, my hair was damaged & falling out, I had several spots on my scalp that constantly itched and flaked & bled, my eyebrows began to fall out, and I was drinking caffeine all day just to stay awake & semi-functional at work & chasing after a toddler. My iron count was under 2. 
My gastroenterologist said that seemed a pretty typical path for people, and noted that I likely had cancer or internal bleeding that was missed in all of my other tests, or I had Celiac Disease. We scheduled my endoscopy & colonoscopy for biopsy & I had my last gluten laden meal right after... 

Now when I get glutened, it’s a purge of my entire system. It comes on in about 5 minutes. I spend the first few hours vomiting and having diarrhea, and then when I think I might be done, if I’m even able to stand (I have had waiters & security from clubs load me into the car so my husband or friends can drive me home hours after they’ve closed - talk about embarrassing.), the vomiting and dry heaving starts as soon as I’m up on my feet. 
Brain fog is present for about 2 weeks, and then I slowly start building up to normal. 

Keep pushing for the answer, as it will come. Listen to your body. Know you’re not crazy. 
Best wishes in your journey to diagnosis. 

[Wheatwacked]

If you have Celiac Disease, it is genetic and you've had it all your life. Many of the symptoms that you've had all your life and been told it's normal will go away once you start a Gluten free diet and replenish your vitamin deficiencies. There are around three hundred symptoms possibly linked. I counted 18 myself.

With your mix of symptons, there could be other causes but Celiac or Non Celiac Gluten Sensitivity is the largest common denominator. Good place to start.

No one yet knows what causes an exacerbation. My son had it as a 6 month old, I didn't have it till I was 60 and it took three years to figure out. There are genetic and blood tests now that may confirm Celiac without the need for an endoscopy. I agree with you father, there is big bucks in wheat commodities and pharmaceuticals. Doctors do what they were taught. Forgive them for they know not.

For all but the genetic test you do need to be eating gluten to get accurate results. In the meantime, Geritol Multivitamins has the daily requirement for the most vitamins and minerals in one pill a day. It may help you over the hump. Others have all the vitamins, but less than the RDA required for health. To heal you need more than the minimum that 100% represents. Aside from the possible deficiencies caused by malabsorption, diahrea and thowing up and our western diet itself cause others.

Don't give up.

[greenbeanie]

I’m so sorry you are going through this, and especially that your doctors keep dismissing it as anxiety. I had doctors telling me for almost three decades that that having diarrhea 8-12 times a day was just anxiety (without doing a single test other than a stool sample for parasites, and without ever referring me to a GI). The longer it went on, the more they dug in and insisted it must just be “normal for me” because it happened so often and for so many years. I eventually gave up seeing doctors myself and went gluten free myself while I focused on getting my daughter diagnosed, even though I was well aware that being gluten free would make future tests invalid. I’ll spare you the long version of the story, but my daughter ended up with strong positive blood tests and biopsy-confirmed celiac, and  I did later get a celiac diagnosis from a GI myself. But mine involved an awful gluten challenge that made my hair start falling out, and it wasn’t a clear-cut diagnosis like my daughter’s.

It is certainly possible to develop celiac as an adult, or to have it for years (perhaps since childhood) without realizing it until the damage worsens. Whether that is what’s going on in your case or not, it sounds like there is obviously some problem and you need answers.

On a practical level, on thing I’ve found that may convince doctors to order tests when they keep dismissing problems without full investigation is to go on the record *in writing* stating that you think it’s important to order celiac tests and that you disagree with their decision not to do so. (This can work for other conditions too, if you strongly suspect that a certain possibility should be investigated.) If there’s some sort of patient portal or secure email/medical records system, you might try sending a message there. A nurse rather than the doctor will probably read the message, but that may not matter. The point isn’t necessarily to convince them that the tests are necessary (though that would be ideal), just to at least get them to cover their bases and order the tests so that they can’t later be seen as neglecting a clearly-relevant patient concern. It’s much easier for doctors to dismiss patient concerns as anxiety when speaking in person - especially since talking to dismissive doctors can actually cause/worsen the natural anxiety anyone would feel when their concerns aren’t taken seriously! It’s much harder for them to justify ignoring a short, pointed, and reasonable request in writing when they know the request is now on file. If they don’t have an electronic patient portal, you could mail or hand them a short written letter and ask that it be included in your file. 

[RMJ]

In most states in the US one can go online and order some blood tests, including those for celiac disease.  You place the order online, then go in to a lab to get the blood drawn. One is www.MyMedLab.com, but there are others.  They don’t all do a full celiac panel.

[Russ H]

I don't know how the system works in the US, but in the UK your symptoms would be enough for your GP to refer you to be tested for coeliac disease. For persons under the age of 55, this is now done by blood test alone. People who are symptomatic and have negative blood test, or are 55+ have an additional endoscopy. 1% prevalence in the general population but for someone who presents multiple times with gastrointestinal symptoms, the probability is much higher.

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations

[iceicebritney]

10 hours ago, MJ Crowley said:

Dear IIBritney,  I was diagnosed a little over one year ago (at age 76) and now realized I suffered symptoms for well over 15 years...so it's not just a "childhood" disease.  And, yes, a couple GI doctors did not bother to check for celiac.  One thing I did last year was ask for a genetic test. (if Dr refuses you can do a 23andme yourself)  ( I did both).  I only have one gene but who knows what or when it was triggered, as I ate gluten for 75 years.  I am also very active and always ate a healthy diet.  One plus year off gluten and I feel so good, I would never go back.

Thank you so much! Thinking back now, I know I’ve had my share of stomach issues here and there over my 39 years, but they were maybe a once a year or once every two year situation where I just got so sick from eating something that I couldn’t leave the bathroom. However, I can’t say for certain what I was eating at the time because I didn’t think anything of it. I had a doctor tell me in 2011 when I had Norovirus that “my stomach would never be the same again.” I just thought every time I got sick from eating something it was because of what he said. Could it be gluten related, I don’t know? It’s reassuring to hear that you received a diagnosis in adulthood so I thank you very much for sharing that!

[iceicebritney]

8 hours ago, Kate M said:

Britney, 

Your issues sound all to familiar. I was diagnosed as an adult (age 29) after almost a year of blood work & testing every couple of weeks, and me pleading with doctors for more tests. I’ve always had mild allergies to some foods & low iron, and even as a toddler it was noted, but I was given iron supplements & my doctors just asked if I was Mediterranean over & over.

I had been continuously altering my diet for years at my diagnosis - things like stop eating meat (for almost 7 years), or I only ate whole grains & wheat - wondering if my body just couldn’t digest properly and needed more fibrous foods after starting to eat meat again. I took Prilosec for years & had multiple GI studies done for severe acid reflux. I had scans completed to see if I had obstruction in my bowels or tumors on my stomach. I had low abdominal pain complaints - so I also had ultrasounds completed by my OB/GYN. 

When I finally got to a gastroenterologist who would listen, he asked if I was Mediterranean (no) or Irish (yes)... I told him of my issues that had been plaguing me for the better part of almost 2 years at that point... Diarrhea immediately after every meal, stomach pain & cramping that had me in tears in the fetal position on the floor for hours, my hair was damaged & falling out, I had several spots on my scalp that constantly itched and flaked & bled, my eyebrows began to fall out, and I was drinking caffeine all day just to stay awake & semi-functional at work & chasing after a toddler. My iron count was under 2. 
My gastroenterologist said that seemed a pretty typical path for people, and noted that I likely had cancer or internal bleeding that was missed in all of my other tests, or I had Celiac Disease. We scheduled my endoscopy & colonoscopy for biopsy & I had my last gluten laden meal right after... 

Now when I get glutened, it’s a purge of my entire system. It comes on in about 5 minutes. I spend the first few hours vomiting and having diarrhea, and then when I think I might be done, if I’m even able to stand (I have had waiters & security from clubs load me into the car so my husband or friends can drive me home hours after they’ve closed - talk about embarrassing.), the vomiting and dry heaving starts as soon as I’m up on my feet. 
Brain fog is present for about 2 weeks, and then I slowly start building up to normal. 

Keep pushing for the answer, as it will come. Listen to your body. Know you’re not crazy. 
Best wishes in your journey to diagnosis. 

How frustrating this must’ve been for you! I’m so sorry to hear this. I just don’t understand how they can allow these symptoms to go on for so long without answers. There are definitely times where I feel as you’ve described, especially with the brain fog. I have never given a thought to gluten before and I eat a lot of bread, pasta, pizza (I’m Italian lol). I think even if I do receive the approval for a gluten test, if it’s negative I will try cutting out gluten just to see if it has any effect. 

[iceicebritney]

7 hours ago, Wheatwacked said:

If you have Celiac Disease, it is genetic and you've had it all your life. Many of the symptoms that you've had all your life and been told it's normal will go away once you start a Gluten free diet and replenish your vitamin deficiencies. There are around three hundred symptoms possibly linked. I counted 18 myself.

With your mix of symptons, there could be other causes but Celiac or Non Celiac Gluten Sensitivity is the largest common denominator. Good place to start.

No one yet knows what causes an exacerbation. My son had it as a 6 month old, I didn't have it till I was 60 and it took three years to figure out. There are genetic and blood tests now that may confirm Celiac without the need for an endoscopy. I agree with you father, there is big bucks in wheat commodities and pharmaceuticals. Doctors do what they were taught. Forgive them for they know not.

For all but the genetic test you do need to be eating gluten to get accurate results. In the meantime, Geritol Multivitamins has the daily requirement for the most vitamins and minerals in one pill a day. It may help you over the hump. Others have all the vitamins, but less than the RDA required for health. To heal you need more than the minimum that 100% represents. Aside from the possible deficiencies caused by malabsorption, diahrea and thowing up and our western diet itself cause others.

Don't give up.

Thank you so much! I have plenty of gluten I believe in my system as I continually eat pastas, breads, etc. I’m new to all of this, so could you please tell me what you mean by “the hump”? Does that mean as I cut out gluten I’ll go through withdrawal? Also, is there some website or an app where I can type in a food to see if it has gluten?

[iceicebritney]

6 hours ago, greenbeanie said:

I’m so sorry you are going through this, and especially that your doctors keep dismissing it as anxiety. I had doctors telling me for almost three decades that that having diarrhea 8-12 times a day was just anxiety (without doing a single test other than a stool sample for parasites, and without ever referring me to a GI). The longer it went on, the more they dug in and insisted it must just be “normal for me” because it happened so often and for so many years. I eventually gave up seeing doctors myself and went gluten free myself while I focused on getting my daughter diagnosed, even though I was well aware that being gluten free would make future tests invalid. I’ll spare you the long version of the story, but my daughter ended up with strong positive blood tests and biopsy-confirmed celiac, and  I did later get a celiac diagnosis from a GI myself. But mine involved an awful gluten challenge that made my hair start falling out, and it wasn’t a clear-cut diagnosis like my daughter’s.

It is certainly possible to develop celiac as an adult, or to have it for years (perhaps since childhood) without realizing it until the damage worsens. Whether that is what’s going on in your case or not, it sounds like there is obviously some problem and you need answers.

On a practical level, on thing I’ve found that may convince doctors to order tests when they keep dismissing problems without full investigation is to go on the record *in writing* stating that you think it’s important to order celiac tests and that you disagree with their decision not to do so. (This can work for other conditions too, if you strongly suspect that a certain possibility should be investigated.) If there’s some sort of patient portal or secure email/medical records system, you might try sending a message there. A nurse rather than the doctor will probably read the message, but that may not matter. The point isn’t necessarily to convince them that the tests are necessary (though that would be ideal), just to at least get them to cover their bases and order the tests so that they can’t later be seen as neglecting a clearly-relevant patient concern. It’s much easier for doctors to dismiss patient concerns as anxiety when speaking in person - especially since talking to dismissive doctors can actually cause/worsen the natural anxiety anyone would feel when their concerns aren’t taken seriously! It’s much harder for them to justify ignoring a short, pointed, and reasonable request in writing when they know the request is now on file. If they don’t have an electronic patient portal, you could mail or hand them a short written letter and ask that it be included in your file. 

Thank you very much for sharing your story. It really gives me hope. I hadn’t thought about submitting a request in writing, but I can absolutely do that! Celiac is something I’ve said from the beginning but has always been denied because my doctor continually shushes me by saying 1. Celiac is something you’re born with and 2. I don’t get sick everytime I eat pasta or bread so I don’t have celiac. I will put in a written request!

[iceicebritney]

3 hours ago, Russ314 said:

I don't know how the system works in the US, but in the UK your symptoms would be enough for your GP to refer you to be tested for coeliac disease. For persons under the age of 55, this is now done by blood test alone. People who are symptomatic and have negative blood test, or are 55+ have an additional endoscopy. 1% prevalence in the general population but for someone who presents multiple times with gastrointestinal symptoms, the probability is much higher.

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations

Thank you for sharing this Russ! This is very helpful. I don’t understand why the pushback with my repeated request… but it’s consistent with each of my doctors. A friend just recommended another Gastro specialist tonight and I’m going to call & try to be seen by them. Meanwhile I’m pushing my general doctor for a celiac blood test at the very least. If it’s something as simple as a blood test then I just don’t understand why they are so opposed! Thank you again

[Wheatwacked]

Call your insurance to ask if they need to preauthorize the tests so you know your cost.

[GodsGal]

1 hour ago, iceicebritney said:

Thank you so much! I have plenty of gluten I believe in my system as I continually eat pastas, breads, etc. I’m new to all of this, so could you please tell me what you mean by “the hump”? Does that mean as I cut out gluten I’ll go through withdrawal? Also, is there some website or an app where I can type in a food to see if it has gluten?

One website that really helped me out as I got started is glutenfreewatchdog.org. Also, this might be a good place to get some information!

 

[psawyer]

9 hours ago, Wheatwacked said:

If you have Celiac Disease, it is genetic and you've had it all your life.

Celiac disease does follow genetics, but genes alone do not automatically mean celiac disease. It has to be triggered by something that activates the response. Identical twins have the same genes, but often only one develops celiac disease. Common triggers are pregnancy, a viral infection  such as flu, or any other event that stimulates the immune system. It can be physical, such as the examples above, or emotional, such as divorce or job loss.

[AlwaysLearning]

Oh, you poor thing! Sorry to hear that you're suffering ... and that doctors suck so badly. 

Your difficulty finding doctors who are willing to take you seriously sounds all too familiar. I actively sought out a diagnosis for about 20 years and had plenty of doctors tell me my aches and pains were all in my head. 

I don't know if anyone mentioned it yet, but you need to be consuming gluten every day for 1-3 months for blood tests, which look for the reactions to gluten, to be effective. Also, if you go gluten free before getting tested, you may never be able to get tested because your reactions to gluten could become worse, presuming you have celiac. Sure, overwhelming diarrhea can be a symptom of celiac, as can headaches and a whole list of more than 600 symptoms. Because it is an autoimmune disease where your body attacks itself, everyone can be affected differently. I don't get the celiac rash so I don't know if what you describe could be DH.

But even if it ends up not being celiac, the similarities do make it seem as if autoimmune or immune reactions to food are likely suspects. 

One of the things I did while still searching for answers for myself was to keep a food/symptom diary. Even though I kind of sucked at entering my data for more than a week at a time, the exercise did help me to pay attention to and remember the information even when I didn't write it down. It did eventually help me link a massive worsening of my symptoms to a change in how much gluten I was consuming. 

The food symptom diary idea also helps you to look at food differently. Learning more about different food groups helps you identify secondary problems. For instance, many celiacs will have difficulty digesting certain food groups until their bodies have had a chance to heal after going gluten free.

You might want to seek out help from a professional who claims to specialize in celiac, even if they aren't in your medical plan and you have to pay out of pocket. They would be likely to also understand more about food-related health problems and autoimmune diseases as well. Getting the initial diagnosis is often the biggest hurdle for celiacs. 

Anyway, best of luck to you in getting the answers you seek! Let us know how it goes.

[Wheatwacked]

22 hours ago, iceicebritney said:

“the hump”

Withdrawal, some do, some don't. In the meantime one of the classic effects of Celiac Disease is vitamin and mineral deficiencies because of atrophy of the villi in the small intestine , and diahrea causes potassium loss through the large intestine. Cutting out processed food like bread you get less nutrients like folate and iron that are added to foods (fortified) because the studies indicate that without fortification we do not eat enough in our Western diet. and governments have mandated that the nutrients taken out by processing be replaced . These are essential nutrients. You can start to replenish them even without starting Gluten free and get the benefits. Some can be tested for, some like potassium and calcium for example cannot. Plasma levels are tightly controlled by homeostasis so our systems will steal from cells to maintain blood plasma levels. Maybe why bone loss is so frequent in Celiac? So the hump is the period of healing between learning what you can and cannot tolerate and when you can absorb the nutrients you need from your food.

[Abcdefghi]

On 9/15/2021 at 12:15 PM, greenbeanie said:

I’m so sorry you are going through this, and especially that your doctors keep dismissing it as anxiety. I had doctors telling me for almost three decades that that having diarrhea 8-12 times a day was just anxiety (without doing a single test other than a stool sample for parasites, and without ever referring me to a GI). The longer it went on, the more they dug in and insisted it must just be “normal for me” because it happened so often and for so many years. I eventually gave up seeing doctors myself and went gluten free myself while I focused on getting my daughter diagnosed, even though I was well aware that being gluten free would make future tests invalid. I’ll spare you the long version of the story, but my daughter ended up with strong positive blood tests and biopsy-confirmed celiac, and  I did later get a celiac diagnosis from a GI myself. But mine involved an awful gluten challenge that made my hair start falling out, and it wasn’t a clear-cut diagnosis like my daughter’s.

It is certainly possible to develop celiac as an adult, or to have it for years (perhaps since childhood) without realizing it until the damage worsens. Whether that is what’s going on in your case or not, it sounds like there is obviously some problem and you need answers.

On a practical level, on thing I’ve found that may convince doctors to order tests when they keep dismissing problems without full investigation is to go on the record *in writing* stating that you think it’s important to order celiac tests and that you disagree with their decision not to do so. (This can work for other conditions too, if you strongly suspect that a certain possibility should be investigated.) If there’s some sort of patient portal or secure email/medical records system, you might try sending a message there. A nurse rather than the doctor will probably read the message, but that may not matter. The point isn’t necessarily to convince them that the tests are necessary (though that would be ideal), just to at least get them to cover their bases and order the tests so that they can’t later be seen as neglecting a clearly-relevant patient concern. It’s much easier for doctors to dismiss patient concerns as anxiety when speaking in person - especially since talking to dismissive doctors can actually cause/worsen the natural anxiety anyone would feel when their concerns aren’t taken seriously! It’s much harder for them to justify ignoring a short, pointed, and reasonable request in writing when they know the request is now on file. If they don’t have an electronic patient portal, you could mail or hand them a short written letter and ask that it be included in your file. 

YES! This! I work in healthcare and I do this myself! I put everything in the portal in writing! I get MUCH better responses that way! Portal messages go directly in the medical record and are a major litigation nightmare if not addressed and the patient later sues. 

[Jackie Garrett]

Hello iibritney

If I was a Dr. and you came to me, the first thing I would want to know what is  your diet and that includes drinks. I would then say to write a food Diary which includes drinks, and then write  down when you get reactions. And then I would start questioning Dairy, Gluten or are your Histamine levels too high, the first thing I would suggest would be avoiding Dairy and see how that’s goes and that would mean changing any meds your on to a lactose free medication, supplements too, I would say avoid alcohol and food with preservatives in too, as they all contain Dairy starter cultures as many people do not know this and see how you get on, it will take a few weeks maybe or maybe less to see improvements, then if that doesn’t work I would suggest avoiding Gluten but just one thing at a time so you will know which one it is, by doing this it may reduce histamine levels naturally, then If this didn’t work I would then recommend a low histamine diet through a dietitian and see how that goes, I will say the body doesn’t like preservatives so by eating well with lots of veg/ fruit and water and cooking from scratch is what our bodies thrive on and following a more alkaline diet, and hopefully that should be the end of your problems that’s is what I would look at first, We are what we eat/drink !!! Watch your acid levels in drinks Tea/Coffee/Milk, Alcohol,  they all add up in making the body become more acidic, water is best it hydrates us so much. I hope you get well whatever you try. 

Jackie

[De De]

On 9/14/2021 at 6:14 PM, iceicebritney said:

I am a 39 year old female who has been suffering with a variety of symptoms for the last 3 years. I was completely healthy with no issues prior. No allergies, very active physically and love food.

I know my case is complicated, but I’m hoping someone here can chime in with advice. I’ve seen a number of professionals who’ve all written me off as too complicated to diagnose so I truly appreciate anything from anyone!

In fall 2018, I was at a public event when all of a sudden I felt a sensation in my mid abdomen/upper stomach that felt like a drop. It was immediately followed by the urge to make a bowel movement immediately. I became anxious and ran to the bathroom. I eliminated everything I had in me via diarrhea over and over. I then began to shake all over uncontrollably with chills. Afterwards, I feel as if I’ve been poisoned. Was that anxiety, I can’t say. I went to the hospital where they did a CBC and EKG on me, gave me some fluids and told me I was fine. I must’ve just eaten something bad. I wrote it off. 
In July of 2019, I was at another public event when all of a sudden I felt that same sensation. I told myself I’m fine and tried to make it go away because I was at a social event and I didn’t want to draw attention to myself. I eventually had to give in as the urge to eliminate just kept coming. I ran to the bathroom and the events repeated from there. I went home and slept it off hoping it wouldn’t return. After all, the ER told me I was fine last time.

In September of 2019, a more serious episode occurred in the morning after my run. The urge to eliminate came on suddenly, the shaking returned, and an overwhelming sense of nausea was now present. I lived in the bathroom that day from 9:00 am until noon. The poisoned feeling went on for days after the episode to the point where I did not want to eat anything.
In November of 2019, another episode occurred the same as previously described. I went to the ER again where they made me feel like I was crazy, and just another woman with anxiety issues. My CBC came back normal. They prescribed me anti anxiety meds and sent me home. 
In January of 2020, I was overcome one evening with the worst headache I’ve ever experienced. Never had a headache in my life, and this was unbearable. Shortly after, I had another episode and felt as if I had been poisoned for days. I went weeks fearing food and afraid to put anything in my body. I made an appointment for my general doctor who told me I again have anxiety. I started taking the anti anxiety medications. I continued having episodes. 
I did not have another episode until July of 2020, but I now have a new symptom - a burning/itching rash that appears hive like all over my abdomen, chest, neck, face and scalp. Itching constantly at night, during the day and the worst when I sweat like during my run. My general doctor told me I had scabies and gave me a medication cream to put all over my body. I did and nothing changed. I went for a second opinion at another general doctor who told me it was not scabies and that I appear to be allergic to something. 
I was sent to an allergist who performed food allergy tests and skin tests on me - all negative.  The allergist began treating me for Mast Cell Activation Syndrome. I was taking 2 Allegra in the morning and 2 xyzal at night - it was a lot. Nothing changed. The rash came and went with the episodes. Then in the fall of 2020, a new symptom appeared - night sweats and trouble sleeping. I have never had a problem sleeping, but all of a sudden I couldn’t sleep or fall asleep. When I did fall asleep, I would wake up drenched in my own sweat, need to change and unable to fall back asleep.

From January 2021-July 2021, my white blood cell count continued to drop on my CBCs. They were signiciangly below “normal” and then finally in August my CBC was at 4.0 which was not taken after an episode but during a period of feeling “better than i do when I’m having an episode.” The CBCs were always drawn within 24hrs after my episodes. No one can explain why. I was sent to hematology, and they told me I do not appear to have a disease of the blood, but that I appear to have a systemic autoimmune disorder. 

The episodes continued here and there and then In July of 2021, a new symptom presented itself post diarrhea - indigestion/heartburn which I’ve never experienced before in my life. After I’d have an urge to eliminate, I’d be overwhelmed with heartburn and indigestion that lasted for days. For the record I do not feel any acid coming up my throat. However, when I went to bed at night - I’d wake up with a burning sensation in my upper stomach/chest. I am not overweight and I am very physically active. My general doctor put me on Prilosec OTC which did nothing. I was then put on Protonix and developed a dry cough/hoarse voice that occurs after I eat anything or lay down. I’ve been on the Protonix for over one month and although the indigestion/heartburn has lessened but is still present, the cough has continued without change. 

I was referred to John’s Hopkins Allergy and Immunology for Mast Cell and told I do not meet the criteria for Mast Cell. My general doctor sent me for menopause testing on my hormones - all normal. I was sent to a neurologist for migraines that I didn’t have - no blurry vision, no vomiting, no light sensitivity, and most of the time the headaches aren’t debilitating - only that one time. They did an MRI and CT scan of my brain which all were normal. I was then sent to an ENT for the headaches who told me I am perfectly healthy. I visited a Gastroenterologist for irritable Bowel hoping for some guidance and was told that my case is “above his pay grade”. They put me on Bentyl 4x a day and said the best they could do was treat my symptoms because my blood work doesn’t show a cause for a colonoscopy. I continued to have episodes while on Bentyl.
I have never been tested for celiacs but I keep pushing for it. They tell me my symptoms don’t align with celiacs, but I’m wondering if there is anyone here who can verify that? I’ve searched for celiac stories in older adults and they are hard to find. At this point, I’m just looking for any help or advice I can get because it’s been three years and the medical system has basically written me off all while I am miserable. 

Any advice or direction would be greatly appreciated as I have nowhere else to turn. Thank you in advance!

Well I had to have scope put down my throat because I was being misdiagnosed for 40+ year and I was close to killing my because I was continuously ate gluten food. 

[Karen Rakhshan]

I am so sorry for your long-term pain and suffering. My symptoms are very similar to yours. Diarrhea for seven years now. Two doctors told me to take Metamucil. It didn’t help. Stomach pain, bloating and terrible nighttime diarrhea got worse and worse. I only stumbled upon Celiac as a possibility through a 23andMe genetic test which indicated I had the genetic marker for it. I went to my GP asking for the test and was told sure - I’ll give you the order, but you probably don’t have it. Guess what?  My blood work was off the charts positive. So high of a number, in fact, that the gastroenterologist I was sent to confirmed me even before a biopsy. 
The gastro visit was just last week. I’ve been gluten free for a month now. Small improvement so far, but I’m hoping to continue healing.