Jordan Carlson

Well, currently making my way through my first gluten reaction after being gluten free after my ednoscopy for about 2 and a half months.  Mustve been some cross contamination in the food at the wedding I was at.  Usually takes about 1-2 days for the reaction to reach its peak.  Then the nausea gets pretty bad and end up having to take multiple trips to the bathroom at work throughout the day to dry heave over the toilet.  Nothing ever comes up though.  But I also have zero appetite right now and not able to eat much while I am reacting.  Anyone else experience this and have any tips to control the nausea abit? Its terrible.

Does anyone else get muscle soreness and joint pain after eating popcorn?  I thought maybe it was a fluke the first time it happened but I tested it out this past weekend and the day after it felt like I had the workout of a life time lol.  No stomach pain or bloating, just the muscle soreness and joint pain.  Anyone experience anything like this?

@Tjweston I second @trents caution about going gluten free prior to getting tested!  Unfortunately to get the endoscopy to get the diagnosis for celiac disease, it took a full year from when I tested positive on the blood work for celiac to get in for the procedure.  I went gluten free when I found out through the blood work I was potentially celiac as I did not want to damage my stomach any further.  When I got the date for my test, I was intructed to eat gluten for atleast 2 weeks prior.  The longer you are exposed to gluten before the test, the better the results of the biopsies are so I did 3 weeks.  It was the worst 3 weeks of my life.  I felt absolutely gross, was throwing up, sleeping almost all day....... I highly recommend you keep your bodies tolerance to gluten up until you get tested and get an answer to if you are positive or negative.  But if the health care system is like where I am located and anything takes an absurd amount of time to get in to, understandable if you want to save your stomach as much as you can while waiting.  If not, I would wait to go completely gluten free!

@Ginger38Yes, defenitely do some research to see if higher fat diet is suitable for you!  If you have a history of high cholesterol I would talk to your doctor or health care provider prior to making any drastic changes.  But for the beef, I keep it super simple and to me it is delicious!  As I said prior, I cook my meat in some butter. Then as soon as I put the raw beef into the pan and break it up, I drizzle honey on top of it. I find the honey soaks into the beef while it cooks and it adds the perfect amount of sweetness to it. Then I sprinkle some salt on it once it is cooked and thats it! Very easy to mix in some rice to it as well and/or veggies.  I forced myself to get used to a more plain/bland diet as I was finding seasonings and sauces were causing me minor reactions from something in them.  The honey and salt combo works great for me though!  The less ingredients, the better it is on my stomach.

@Ginger38 well since I am pretty new to this I have been experimenting with different ways of eating to see what makes me feel best. Over the past couple days I have been eating very similar to a carnivore type style diet and it has been working fantastic for me! So I am getting majority of my fats in a day from eggs and beef (although I always buy extra lean beef). I always cook my meat in abit of butter as well for added fats. Adding some avocado to a meal is great as well. Having nuts as a snack. I still do have some carbs in a day but I tend to stick to gluten free oats and rice. I find oats are another great food that keeps me full longer. Staying away from carbs that contain a higher amount of sugar has helped me as well. I find my body digests the sugar way too fast resulting in me feeling hungry right after. My go to when I am wanting a sweeter treat is to just have a banana but any fruit works. For me the cleaner and less foods with additives/fillers I eat, the better and more full I feel!

Hey @Ginger38! I tried out what @Scott Adams mentioned about adding some healthy fats in and its a huge help! Feel much better and I don't have that constant hunger feeling nearly as much. But I agree, the constant hunger is frustrating! Especially after you just ate a good sized meal!

Sounds good! I will list by each biopsy the terms I do not under stand that were found:

Gastric Lesion Biopsy: Foveolar Glandular Hyperplasia 

Duodenum: Villous Atrophy and Intraepithelial Lymphocytosis

There was also mucosa found through out the duodenum, terminal ileum and colon biopsies.

When looking online I saw each stage of celiac disease had these terms listed but I had no idea how to piece it together to compare it to anything. Hopefully someone with more knowledge can point me in the right direction!

Anyone on here farmiliar with stomach biopsy results and know the terminology well? I have the results of my biopsy and would like to know more in depth about.  Such as what stage celiac disease I have.  The resrouces and knowledge of celiac disease in my town is pretty slim so aside from the diagosis I did not get much information.  If anyone can help, that would be awesome!

I know its a common symptom for the first little while when the stomach begins to absorb nutrients again, but wondering what the right thing to do is. I am eating a large amount of food (mostly protein and clean carbs like oats and rice) and I am feeling better than ever before!  I am not gaining weight at all either.  So I am assuming the correct thing to do is to eat when my body wants to eat to make up for a lifetime of not getting all of my food, right? I am not getting a overly full feeling eating all of this food either.  Just seems that the hunger is a little exceseive.  Just wondering how other people coped/dealt with it.  I assume it will go away once my body starts to get back to base line.

Thanks for the reply @Scott Adams! I actually just started a extra strength multivitamin yesterday! I assumed the craving had something to do with a deficiency of some sort. Was thinking maybe even a protein deficiency since I am an active person. I will give the multi vitamin some time to work!

Hello everyone! So I am on week 4 being 100% gluten free again. Long story short, I was back eating gluten for 3 weeks prior to my endoscopy to get the celiac diagnosis.  Now that I have been gluten free for 4 weeks, I have a very strong craving for specifically raw meat haha (raw salmon, raw steak....etc).  When I was eating gluten, I craved greasy and sugary foods.  Now, I have zero interest in that and crave raw meat.  This happened the first time I went gluten free.  But this time around I am much more cautious and have my own toaster, cooking pan and everything like that.  It has made a huge difference and I am starting to feel better than ever! The raw meat craving seems to be much stronger though than the first time around.  Its so strong that it makes me want to start a ketogenic diet.  But I know my carbs are important to me as I am a pretty active guy.  And I also tend to have a tough time digesting if I eat too much meat due to the fat.  Just wondering if anyone else experienced this.  And if so, how did you manage it? Not complaining about it at all, just find it odd that a raw steak looks so appetizing lol.

Thanks for the reply's @Scott Adams and @Beverage! I will try the recommendations you both have. Starting to learn that one of the hardest parts post diagnosis is the trial and error stage as its not as simple as just eliminating gluten. But in the end it will result in me feeling much better and living a better life so I am up to the challenge! Thanks guys! 

Hello! Anyone else get a reaction from products containing yeast extract? Even if its claimed gluten free? Have been getting itchy rashes on my hands and arms after eating and the common ingredient in all the foods that have been causing this was the yeast extract. I am Canada based and it seems that the only gluten free foods that I tolerate well have the “Celiac Canada Gluten-Free” stamp on it. Beginning to realize that the words “gluten-free” on the package of something does not mean it is safe for me. Can anyone else relate? 

Hello everyone! I recently just had my endoscopy/colonoscopy to confirm my celiac diagnosis. I also was diagnosed with chronic gastritis. I believe it would be considered Lymphocytic Gastritis as  intraepithelial lymphocytes were present in my biopsy. But I am no doctor so please correct me if I am wrong! Anyways, looking for tips on how anyone else managed to get the gastritis under control as I am assuming that is the reason why some of my symptoms never went away even while being 100% gluten free. I have started pantoprazole 40mg daily and have been on it for about 2 weeks now. Works great at controlling my heartburn, but still get a burning sensation in my stomach after eating. Hoping someone has some advice for me. Thank you!

Thank you very much for the info Scott! And the seafood and dairy products makes a lot of sense now.  As much as the dermatitis herpetiformis (if that is what it is) would get better, It still has minor flare ups but I do eat a lot of seafood and do have milk here and there so it very well could be that. 

sorry, didn't realize the picture was so horrible lol. But yes to all of the above. The small darker areas in the photo are the little blisters on my hand.

Hey Scott! I have experienced the vertigo many of times and know exactly what you’re talking about. This is a little different though. I guess a better way to put it is that it is a major change in blood pressure rather than heart rate. 

Is that what this is? I am newer to the celiac scene lol. Always thought it was eczema that would never end. But makes a lot of sense if it is dermatitis herpetiformis!

Hey everyone! Wondering if anyone else experiences this. After eating a larger, my heart starts to pound to the point where I can feel my heart beat in my ears. Also experience heart palpitations along with it and usually an anxious feeling. Almost like my body has a massive stress response after the meal. Thinking maybe keeping meals smaller while my stomach heals may help? If anyone has experienced this and has found a way to cope well with it I would love to know!

Very interesting. Thank you for sharing! I have my endoscopy/colonoscopy in about 2 and a half weeks to confirm celiac and also test for suspected inflammatory bowel disease so I have no idea the extent of the damage to my insides or anything like that. Will be interesting to see what comes of it. Thank you again!

The Tissue Transglutaminase Ab IgA test normal range is 12 U/mL or less. And my result was 40.2 U/mL.

Hey everyone! Just wondering if anyone else is comfortable comparing blood test results to mine.  When I tested positive on the blood test (Tissue Transglutaminase Ab IgA) my result came back at 40.2 U/mL. I have read that some people have a much lower number than me and will get the endoscopy biopsy done and still have the disease present and get the celiac diagnosis. More or less just want to know if my number is pretty high or if its a pretty common result. Thanks!

Thank you for your answeres! Sorry @trents I should have added that I am instructed to consume gluten for 2 weeks prior to the scopes for the reason you stated. Not ideal by any means but I am fortunate enough to of gotten the two weeks off of work for medical leave so atleast I can suffer at home LOL. Unfortunately with the medical personal we have in town where I am located, it has taken almost a full year since the blood work came back positive for celiac to get in for the scopes.  But I am commited to this until the end as it is something I have struggled with my entire life and finally found an answer. 

Hi everyone! I am some what new to all of this. I found out that I am pretty much confirmed celiac through blood test back in September (going for endoscopy/colonoscopy July 18th to confirm celiac and test for IBD as well). I would like some insight though as to the reactions I have been having.  So obviously in the begeinning, my reactions felt somewhat normal to me since me being almost 27 years old now and living with it my whole life. I thought feeling crappy, bloated and in pain was just normal until I realized its not and thats its actualy issue LOL.  But as I have gone longer periods between accidentally eating gluten, my reactions seem to get much worse every time. I also notice that my reactions vary, Sometimes its terrible stomach pain and diarrea, sometimes its painful/uncomfortable blotaing and sometimes its body aches and muscle/joint tightness. I am assuming the reactions vary depending on the amount of gluten I am exposed too. Just wondering if anyone else has similar experiences or can relate to this.