I don’t have a diagnosis but I’m pretty positive I have celiac and have ongoing GI Problems

[RILEYW]

6 months ago I started having problems with constantly having to go to the bathroom, worsening indigestion, bloating, and red breakouts on my skin. My doctor told me I could have IBS and told me to go on Imodium for my frequent bathroom trips and eat bland low fiber food.  I listened but my symptoms got worse. Now I have a high pain tolerance but one day at work my abdominal pain/ right below my belly button got so bad I had to go to the ER; it was unbearable. They did a CT scan and found I had a bowel obstruction and was extremely constipated even though I was having FREQUENT bathroom trips and was in discomfort/ pain 24/7. They basically told me to just take meta mucil and laxatives and it would get better. (I had a good diet and exercise regularly) it helped but the pain was still there. A few months continued and I drastically lost weight and all my muscle, my digestive issues worsened and I went to the ER again and they sent me home with a pain killer and no answers. My GI doctor did a endoscopy + colonoscopy after things got really bad. He put me on linzess and I decided to try one last thing and cut out gluten. My skin cleared and my bowel movements were normalizing after months. My workouts were improving and I felt so much better. Whenever I eat gluten I get horribly sick and it takes WEEKS to get better. I’ve slipped up and have been glutened a couple of times and it results in red skin, inflammation and diarrhea/ constipation and gastric reflux. My celiac panel came back negative… they didn’t diagnose me with Crohn’s but found inflammation in my intestines and told me to just eat a high fiber diet. I was gluten free at the time of the panel so idk if this could have impacted the results… I’m currently dealing with a flare up after eating out 2 weeks ago. I asked if it was gluten free but the lady didn’t speak English well and told me it was.. I guess not. I’m frustrated because my digestion was fine before this incident. Anyone who has any advice I’d appreciate it. This has been frustrating for me to not have a clear understanding of what’s going on

[trents]

If your celiac panel was administered after you had started eating gluten free, the panel would have been invalidated. Any kind of testing for celiac disease, whether blood antibody panel or endoscopy with biopsy must be done while still actively consuming significant amounts of gluten daily for a period of weeks to months. When gluten is removed or reduced, inflammation of the small bowel lining begins to subside and antibodies along with it which is what the testing is designed to detect.

[RILEYW]

See this is so frustrating for me to hear. I can’t imagine purposely eating gluten and putting myself through hell and back just to get a diagnosis. The GI doctor also didn’t make me aware of this I’ve had to do extensive research myself. Is there any other way to get a diagnosis? Whenever I went to the ER they’d just do a CT scan and they were quite dismissive of me the first time I went. They told me I just had anxiety and a stomach ache. My family was so scared because I’d get a skin rash on my face, had to leave work and I couldn’t go to any public place without the fear of not having access to a restroom. My symptoms are disappearing now I’ve found out eating gluten causes it. I grew up eating gluten and have never had an issue until my early 20’s. 

[trents]

No, there is no other way to get an official, definite diagnosis of celiac disease. At this point the only two diagnostic methods are blood antibody testing and and endoscopy with biopsy but both require active gluten consumption for weeks/months in order to be valid because both are looking for the inflammation and/or damage caused by gluten consumption over time. Apart from a gluten challenge, you would need to live with some degree of uncertainty as to whether you have NCGS (Non Celiac Gluten Sensitivity) or Celiac Disease. They share many of the same symptoms but NCGS is 10x more common. There is no test for NCGS. Celiac disease must first be ruled out. Total abstinence from gluten is required for both so at the end of the day the antidote is the same. Many people are in your same boat, having experimented with the gluten free diet before seeking diagnosis. And it is also very common, I'm afraid, for physicians to neglect to tell their patients to abstain from gluten-free eating until all testing is complete. There is still an appalling amount of ignorance/indifference in the medical community toward gluten disorders.

Concerning your rash, do the bumps have blisters in them? There is a certain kind of rash (dermatitis herpetiformis or "dermatitis herpetiformis") that is definitive for celiac disease. There is no other known cause. A minority of celiacs get dermatitis herpetiformis but if you have dermatitis herpetiformis you have celiac disease. dermatitis herpetiformis's bumps have pustules in them.

[RILEYW]

Yes my bumps have white blisters like acne but it only flares up when/ after I’m exposed to gluten. Thank you for all this information because it’s been frustrating to say the least not having a definitive answer. I’ve never experienced this amount of pain in my life so it’s been scary! I would also get partial blindness in my left eye after a flare up but unsure if this is related or not

[trents]

Sounds like it could be dermatitis herpetiformis. Celiac disease can be confirmed when there is dermatitis herpetiformis by skin biopsy during and outbreak. But it can be difficult to schedule a dermatology appointment on short notice and even more difficult to find a derm doc who knows how to properly do the biopsy.

One thing you might consider is getting genetic testing done to establish the potential for celiac disease. About 40% of the general population have at least one of the two genes known to be associated with the development of celiac disease but only about 1% of the general population actually develops the disease. But if you don't have either of the genes, you're probably looking at NCGS. So, genetic testing is a rule out sort of thing for celiac disease. Physicians can order genetic testing and you can also get it done via private third party companies such as 123 and Me

Gluten disorders are known to cause neurological disease. So, I'm thinking your visions issues fall under that category.

You wrote: "My symptoms are disappearing now I’ve found out eating gluten causes it. I grew up eating gluten and have never had an issue until my early 20’s." Well, I grew up eating gluten as well and my celiac symptoms seemed to manifest at about age 37. It can onset at any age. And most people have it for years before the symptoms get severe enough to motivate them to seek answers. It's common for it to take 10 years or more to get a definite diagnosis after onset of symptoms. Took 13 years in my case. I'm turning 73 next month.

[marjoryrw1]

I was tested for gluten and one antibody appeared. Went to gastro and yes was told to verify needed a biopsy and to determine either gluten intolerance vs celiac. Appointment for this is months away. Meantime I have had no gluten, became more or less vegan, no dairy, walk 30 min and no junk food/processed foods. I have had to watch sugar and lower my  carbs.   (became diabetic at same time aa antibody.) Bottom line and now gluten free,   I at 73 have felt really good, lost 20 lbs, digestion great, no bloating and sugar levels normal, cholesterol best in years though high and brain fog lifted. Been a challenge but think I have proven to myself diet is the key. Haven’t had this energy in many years! Testing later this year but obviously gluten free is the key. 

[trents]

14 minutes ago, marjoryrw1 said:

I was tested for gluten and one antibody appeared. Went to gastro and yes was told to verify needed a biopsy and to determine either gluten intolerance vs celiac. Appointment for this is months away. Meantime I have had no gluten, became more or less vegan, no dairy, walk 30 min and no junk food/processed foods. I have had to watch sugar and lower my  carbs.   (became diabetic at same time aa antibody.) Bottom line and now gluten free,   I at 73 have felt really good, lost 20 lbs, digestion great, no bloating and sugar levels normal, cholesterol best in years though high and brain fog lifted. Been a challenge but think I have proven to myself diet is the key. Haven’t had this energy in many years! Testing later this year but obviously gluten free is the key. 

Welcome to the forum, @marjoryrw1! Glad to hear of your success with the gluten free diet. One small correction to something you said. Celiac disease is synonymous with gluten intolerance. Gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity) is the other gluten disorder with similar symptoms to celiac disease but it does not damage the lining of the small bowel as does celiac disease.

And are you aware that because you have already embarked on the gluten free diet your upcoming biopsy to confirm celiac disease will likely be invalidated. Once you go off gluten your small bowel villous lining will start to heal and there may not be enough damage left to be seen in the biopsy as confirmation of the positive blood antibody test. Your physician should have explained this to you but sadly, we here this same story over and over.

Edited March 23, 2024 by trents

[knitty kitty]

@RILEYW and @marjoryrw1

Consider having genetic tests done to see if you have any genes for Celiac Disease.  

You do not have to be eating gluten for a genetic test for Celiac Disease. 

Genes don't change.  If you have a gene for Celiac disease, and improve on a gluten free diet, this can be a diagnosis of Celiac Disease.  

[sboo]

I did the genetic test which is a simple blood test and the other thing you can do is try to find out if anyone else in your family has coeliac disease or known issues with gluten, aunts uncles, grandparents etc. Also coeliac is an autoimmune disease and these sometimes cluster, so do you have any other autoimmune diseases e.g. under or over active thyroid or diabeties.

Really the best thing you can do is read up on how to be safe when eating. Research the restaurant before you, ensure you are not getting cross contamination at home from wooden chopping board, wooden spoons, surfaces with crumbs on etc. I ended up buying an air fryer to cook my food separately as I was still getting upset from the fan oven blowing things on to my food.

I take glutenflam when I eat out.

 

[marjoryrw1]

I am aware of the gene test but will first go through the biopsy later this year due to insurance coverage and another needed test..  (I have scheduled both at the same time.)  Where I live it takes almost 3 months to schedule a biopsy. It took 4 months for a gastro appointment and had to travel 2 hours for it.   So yes, all was explained I will need to eat gluten prior to my testing so that a verification is tried and true. In fact will help with the other test! He teased me that I might not even have to drink that awful stuff, just eat gluten. My physician and I have a teleconference before the biopsy. I am confident he knows what is best for a good diagnosis and what is needed. In the meantime, I had no choice but to eat gluten free as I would not have been able to live healthy, as bad as my symptoms were. He mentioned that with my antibodies and some other tests and my history, he expects a  positive for celiac and not gluten sensitivity, but yes the test will determine that. 

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day: