Yet another gluten story

[Felipe]

Hello people,

38, male here 🖐️ sharing my story. (skip to the bold lines to simplify)

Since little I have suffered from intestinal issues, pain, constipation, diarrhea, vomit etc. At age 10 I was diagnosed with dairy "intolerance" that 3 years later turned to be allergy, after almost dying of an anaphylaxis attack. 😬 Add some anxiety to the mix cause of asperger, diagnosed at age 17 after years of therapy (family thought I was nuts. 🤪) My whole life I have experienced body ache, sometimes extreme and most of the time just muscle tiredness you could say... Had medicine for pretty much all these issues. I learnt to control my anxiety during college and ditched the meds for that and what a relief this was, even the colors started to look brighter 😎 the only thing back then was that I was doing the "səa food" diet, eating everything in front of me and was 120lbs overweight! At age 30 with 150lbs over now, my DOC told me I have to start taking BP meds cause it was way to high and that I should start losing weight to help the numbers... I have been trying for a long time I said, exercising for hours and even eating small portions or not eating... I was even doing water fasting for a week every month but the weight came back right after I started eating again. They checked the thyroid to see if it was a problem with that but everything came back fine, after a whole bunch of exams the only thing that came back as a positive diagnosis was pre diabetes heading to type 2, so more meds for that too...

Years passed and about 5 years ago, I started experiencing some weird cough here and there that came out of nowhere with some ribcage pain, nothing really hard (or maybe it was but since I have been dealing with pain my whole life...) and it was so random as well. In 2018 I was rushed to the hospital, after one night a very sharp back pain dropped me to the floor, I had 2 kidney stones😭😭 good mother of pain, now I know what women go trough having babies!! In October 2019 I started to have back pain again different though... But this time I also had on my left upper quadrant a burning sensation, went to the DOC and he said that "it seemed to be muscle pain" after CT scan showed nothing weird, to give it sometime to heal. The pain got somewhat better, but I think was more cause of the med pains. Year 2020, Covid got here, the  lockdown was in effect and I started working from home, I remember watching the local news and they said that they didn't know if supermarkets will be open or how they will handle it, so I did what many other did... Went and bought easy food that will last for some time ( didn't care about the toilet paper so much. 😁) Mid April, I started noticing that I was losing weight, and I remember thinking, man, I must be doing something right, exercising at home and eating this type of food, heck yeah! In June, I had one of the worse pains and out mind experiences, was working late n my computer and out of the sudden a horrible pain on my left side ribcage area hit me extremely hard! right after that I got a panic attacked and lack of oxygen, thought perhaps was a product that had dairy or something so I used my epipen, was shaking on the floor ready to call 911 cause it wasn't working as usual but in my mind was ok, may be is just a reaction with a really bad panic attack, I hadn't experienced one in a lonnnng time, had to go the bathroom, vomited and had bad diarrhea at the same time (fun times...) almost an hour later I started to calm down a bit, but the pain still there strong but since I was a afraid of heading to the hospital cause of covid, I endured the pain till next day. Called the DOC next day and he sent me to do a whole bunch of things, ct-scan, Blod test, MRIs (pretty much the whole body), xrays etc. and I got some more medicine for pain. A week later results came back, the only thing found was my joins were a bit swollen but nothing really dramatic, therefore I was referred to my psychiatrist since apparently covid was causing me these issues. After almost two months, my psychiatrist said and I quote "I believe your pain goes beyond therapy and you need further testing, unless you are masking something after years of experience in therapy ") At this point I was like WTF... Went back to the primary guy, he finally sent me to the GI dude! (couldn't he do that from the beginning instead of wasting my time, money and agony???) Blood test for celiac came back and he needed to confirm with endoscopy. GI: I have news for you, ME: good, bad? is it cancer? How long do I have? GI: Depends on your point of view and attitude 🙂 ME: ok, hit me 😵 GI: You can't eat or shouldn't eat gluten anymore, but as of right now, results don't show enough evidence for celiac 👊 ME: umm ok, I will quit bread then. GI: ... Oh, you are in for a long journey beyond bread 😈 (he really did that semi-evil face. 😄) 

After going gluten free for a few months now, magically the body aches that I have had for years, are gone now (I still feel ribcage/back pain when I ingest gluten), same with acid reflux, my body weight went down like crazy! Im at 174lbs 🙏 he said I might gain weight after going gluten-free but it has been the opposite for me, I have been stable n this weight. Now, there are a few things that I don't know what's going on... gluten-free has cause my body to be super alert like if I am taking adderall or something, because of this, I am experiencing insomnia and sleep like 4-5 hours, I don't really wake up tired or anything but I used to sleep at least 8 hours and nap for 30 minutes everyday... I feel like on cocaine at times or something 😅 I'm also much more hungry than when I was eating gluten and exercising almost 3 times more than before, my body feels warmer as well? I thought perhaps my BP was high or something but nope, it even went down to the 113/64 range... I also have reactive hypoglycemia now but no diabetes??... Weird stuff. I came to realized that perhaps my whole life I have had this intolerance and was the reason for my issues. Are all these symptoms a "normal" process when you quit gluten? 

Cheesus, sorry for the long bible story I just wrote 😔 I am not really good at making them short... Anyhow, I would appreciate any advice or answer you guys can provide me with.

Thank you very much and have a wonderful day 👍

[Scott Adams]

Welcome to the forum. It would be interesting to see your blood test results with the high mark level for each. Given your doctor's reaction "GI: You can't eat or shouldn't eat gluten anymore, but as of right now, results don't show enough evidence for celiac" I think it's safe to say that your antibody levels to gliadin were probably elevated, but maybe not past the threshold of being called "celiac disease." In my mind this is kind of like having high blood glucose levels that are just below the cut off line for diabetes, but your doctor maybe telling you that you're fine...keep eating sugar. Of course this isn't the case, and if you have elevated levels it likely means, at the very least, you have gluten sensitivity, and may be headed towards celiac disease.

It's your call how far you want to push this with your doctors to get a piece of paper that might tell you that you need to stop eating gluten, but to me it sounds like you've already figured this out. Elevated antibody levels + relief of many bad symptoms after going gluten-free = gluten sensitivity and/or celiac disease, and you would need to do a gluten challenge and eat gluten daily for weeks to do further testing to verify celiac disease (but there currently aren't tests for gluten sensitivity).

[Felipe]

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I think it's safe to say that your antibody levels to gliadin were probably elevated, but maybe not past the threshold of being called "celiac disease." In my mind this is kind of like having high blood glucose levels that are just below the cut off line for diabetes, but your doctor maybe telling you that you're fine...keep eating sugar.

Trust me, this scenario has happened couple of times with different things. I try to avoid knowing too much details about results, I'll infinitely research and bother doctors with "how about if we try this and that" and they are not a fan of my pushy attitude sometimes 😊

Quote

you would need to do a gluten challenge and eat gluten daily for weeks to do further testing to verify celiac disease

There's not way that I'm putting gluten in my body again willingly! Celiac or not, I feel the best I have felt ever 🤠 unless they come up with a "cure/procedure" for it, but as far I know there is none at the moment. If it is not killing me in a short period, I will keep doing what I am doing now. I didn't really indulged myself with most products containing gluten or sweets anyway (except chocolate for the sweet side, too much sugar drives my anxiety to crazy levels...) I made a mistake couple of weeks ago eating Quaker Oatmeal cause I thought it was gluten-free but apparently it can be contaminated unless specified.

I guess I just need to find a good gluten-free pasta (currently eating jovial brand), good sauce for it and a decent recipe for regular bread. I am baking my own banana bread and a few other things and I am happy with it 🤗 Also need to figure out the insomnia part and why I feel like running/hyped up all the time and the hunger part which is not convenient! Anyhow, thanks and have a great week! 🙃

[Scott Adams]

Just FYI, about 10% of celiacs (and probably people with gluten sensitivity) react to oat protein, even if the oats are pure and not contaminated with wheat. Most celiacs can eat pure oats, but not all.

[Felipe]

6 minutes ago, Scott Adams said:

Just FYI, about 10% of celiacs (and probably people with gluten sensitivity) react to oat protein, even if the oats are pure and not contaminated with wheat. Most celiacs can eat pure oats, but not all.

Ain't that something... Well, thank you very much again, and it sucks cause apparently corn messes up my stomach as well... Buckwheat cereal it is then... Please don't come back telling me that 3% of celiacs or similar react to this one too 😄 That will make me sad for a few hours 😉

[Scott Adams]

Buckwheat should be good, but get used to looking for "gluten-free" when you buy things like that, as grains can be cross-contaminated.

[Melissa93]

Fellow aspie here! I had a similar experience with losing weight actually. In the last few years I had continue to gain weight (from healthy BMI coming close to 'obese' with 29.5). It frustrated me greatly as doctors kept telling me that I should just 'eat less' or 'step out of the bus one stop earlier for extra walk', it was pretty humiliating as I have been a very active young adult and take care of my diet without letting it become an obsession (quite hard, quite hard). When I got diagnosed last November I started shedding all that extra weight immediately. Even though I would still occasionally gluten myself, I lost 40lbs in 5 months.

 

I'm personally not familiar with the hyper alertness you describe, but I do feel more energetic and very 'light'? 

[Felipe]

3 minutes ago, Melissa93 said:

Fellow aspie here! I had a similar experience with losing weight actually. In the last few years I had continue to gain weight (from healthy BMI coming close to 'obese' with 29.5). It frustrated me greatly as doctors kept telling me that I should just 'eat less' or 'step out of the bus one stop earlier for extra walk', it was pretty humiliating as I have been a very active young adult and take care of my diet without letting it become an obsession (quite hard, quite hard). When I got diagnosed last November I started shedding all that extra weight immediately. Even though I would still occasionally gluten myself, I lost 40lbs in 5 months.

 

I'm personally not familiar with the hyper alertness you describe, but I do feel more energetic and very 'light'? 

Hi there 🖐️ when the DOC told me about the weight and made it sound like I was not putting any effort I thought "if you knew all the effort and multiple hours invested... You wouldn't be saying anything [How dare you] - Meme pic😊" and yes, my weight went down like woow, at the same time me, "please don't let it be cancer..." And I also feel much lighter and for some reason taller? 😄 But nope, have not get any taller.

[CMCM]

Gluten sensitivity is a sneaky and elusive thing.  It is linked to what seems like a gazillion different reactions in the body.  Given your situation, it seems irrelevant at this point whether you are celiac or whether you have gluten sensitivity.....it's all on a gluten sensitivity spectrum in which celiac disease is one point on the spectrum.  Gluten sensitivity and its effects are being increasingly studied, but far less is known about it than celiac and there is no current method of testing to diagnose it.  However, some people are increasingly referring to the whole thing as "gluten sensitivity", and celiac disease is but one of many autoimmune reactions caused by gluten.  And YES....even if you are not celiac, gluten sensitivity is potentially just as serious and can cause autoimmune reactions....just not the one of celiac disease.  If gluten makes you sick, which it clearly does, you are at a point where you must take it 100% seriously and avoid all gluten both seen and unseen.  By a couple of months or perhaps as much as 5 or 6 months, you will see if there is a major improvement in your overall health or not.  If you see definite improvement, you aren't necessarily healed yet....that process could take up to a year or more.  In any case, a necessary first step is to get gluten out of your life forever if you don't want to further compromise your health beyond the possibility of healing.  

[Felipe]

6 minutes ago, CMCM said:

In any case, a necessary first step is to get gluten out of your life forever if you don't want to further compromise your health beyond the possibility of healing.  

Right. To be honest I recently started to learnt what gluten really is and what it does to the body, if it wasn't cause of the negative health events I went trough, probably I would still think that it was just a "trend wagon" for people to feel cool, like that Seth Rogen's movie https://www.youtube.com/watch?v=A1BubC_8Ejc (which I know a few like this 🥱) but the symptoms and pain this generates... It's not joke! I can't imagine what people back in the day had to endure with the very limited food options at the time... I'm a person that as long I have veggies, and some sort of meat I am good but I have read so many individuals struggling cause they can't eat this and that... That's rough, I suffered quite a bit back in the day with dairy cause I love cheese! and as a teenager it was difficult to give it up, even to this day, sometimes I can smell a fresh out of the oven cheese bread 😟  but it is what it is and if you don't adapt, you don't survive so... "Keep pushing and thriving to make the best out of this place son" my grandma used to tell me. 💛

[CMCM]

1 hour ago, Felipe said:

Right. To be honest I recently started to learnt what gluten really is and what it does to the body, if it wasn't cause of the negative health events I went trough, probably I would still think that it was just a "trend wagon" for people to feel cool, like that Seth Rogen's movie https://www.youtube.com/watch?v=A1BubC_8Ejc (which I know a few like this 🥱) but the symptoms and pain this generates... It's not joke! I can't imagine what people back in the day had to endure with the very limited food options at the time... I'm a person that as long I have veggies, and some sort of meat I am good but I have read so many individuals struggling cause they can't eat this and that... That's rough, I suffered quite a bit back in the day with dairy cause I love cheese! and as a teenager it was difficult to give it up, even to this day, sometimes I can smell a fresh out of the oven cheese bread 😟  but it is what it is and if you don't adapt, you don't survive so... "Keep pushing and thriving to make the best out of this place son" my grandma used to tell me. 💛

A longstanding gluten sensitivity/celiac can create other food sensitivities, which may or may not gradually go away if you remove the primary offender...wheat/rye/barley gluten.  My recent reading has revealed that the problem is far more widespread than even I ever realized, and it's likely throughout the population in very high numbers.  My additional food issues are with corn, dairy, nightshade vegetables, lectin containing foods and beans, and probably a bunch of other things.  At this point, after a major gluten crisis that happened to me at the end of December, I don't care what I give up.  I've been totally gluten free since January 12 and I'm finally feeling incredibly better.  I know I have a long road of healing, but things are good again and I don't care about the foods I've eliminated any more (I used to care!!).  I'm currently reading "No Grain, No Pain" by Dr. Peter Osborne.  It has really opened my eyes to what not only gluten, but many other foods can do to the body.  

[CMCM]

Felipe....I have more or less given up on doctors with all this, they just aren't knowledgeable about gluten sensitivity and celiac disease.  If you find one who DOES know about it, you're very lucky.  I decided to educate myself....there's a ton of information out there now that wasn't available 20 years ago, and a lot of newer information just the last 5 years or so.  Learn all you can...it's worth the time and once you have a good amount of information under your belt about all this, you can relate it to what you have observed in your body and in your life.  The biggest positive thing about having this problem is that it is solved/improved/perhaps totally cured by your DIET, and not by drugs which can do further damage to your body.  It's very liberating to understand it all, ultimately.

[Felipe]

1 minute ago, CMCM said:

Felipe....I have more or less given up on doctors with all this, they just aren't knowledgeable about gluten sensitivity and celiac disease.  If you find one who DOES know about it, you're very lucky.  I decided to educate myself....there's a ton of information out there now that wasn't available 20 years ago, and a lot of newer information just the last 5 years or so.  Learn all you can...it's worth the time and once you have a good amount of information under your belt about all this, you can relate it to what you have observed in your body and in your life.  The biggest positive thing about having this problem is that it is solved/improved/perhaps totally cured by your DIET, and not by drugs which can do further damage to your body.  It's very liberating to understand it all, ultimately.

Working on it 🙂 Question, can celiacs be sensitive/allergic to sugar as well? been noticing I am getting pain from things that are gluten-free, zero corn in them which affects me, but still the pain starts... I have not experienced pain before from my banana bread, but since about a week ago, something does not feel right... Today I had an Italian soda and gave me this horrible chest pain for like 40 minutes and later this evening I had a rash n my forehead! (still have it) Yesterday I had an oreo gluten-free cookie and made me itch and again pain. I thought that perhaps the oats in the oreo was the reason yesterday, but today, I was trying to put things together and the only related thing is sugar? I took a benadryl pill and it helped but not sure how exactly it did other than the allergenic way. For years I have stayed away from Antihistamines since to my understanding in a long term, it may lead to dementia and that's one of the things that scare the heck out of me, a good friend is dealing with his father's dementia and really is something that I hope never get.

[BuddhaBar]

4 hours ago, Felipe said:

Question, can celiacs be sensitive/allergic to sugar as well?

I used to be that kind of person who could eat anything without the slightest abdominal discomfort. Even weird combination of foods that would trigger bloating and discomfort in most people, no problems.
However, since celiac I've noticed changes to my GI system. Eating too much sugar is one of them. Causes right sided abdominal pain that's moving up and down. Usually starts in the gallbladder area and then moves down. Can't handle too much fiber anymore and even though I don't have the genes for lactose intolerance and can handle dairy, the combination of dairy and rice makes me bloated and wanting to vomit. That never happened before and I have no problems with rice when there's no dairy involved. SOMETHING happened to my GI system after I got celiac. Something that made me sensitive to stuff I wasn't sensitive to in the past. I can eat moderate amounts of sugar without anything happening, but really sweet stuff like pavlova triggers pain and discomfort. 

[Felipe]

4 hours ago, BuddhaBar said:

I used to be that kind of person who could eat anything without the slightest abdominal discomfort. Even weird combination of foods that would trigger bloating and discomfort in most people, no problems.
However, since celiac I've noticed changes to my GI system. Eating too much sugar is one of them. Causes right sided abdominal pain that's moving up and down. Usually starts in the gallbladder area and then moves down. Can't handle too much fiber anymore and even though I don't have the genes for lactose intolerance and can handle dairy, the combination of dairy and rice makes me bloated and wanting to vomit. That never happened before and I have no problems with rice when there's no dairy involved. SOMETHING happened to my GI system after I got celiac. Something that made me sensitive to stuff I wasn't sensitive to in the past. I can eat moderate amounts of sugar without anything happening, but really sweet stuff like pavlova triggers pain and discomfort. 

humm, interesting, thank you for sharing 🖖

[Scott Adams]

Eating sugar and processed flours/starches can cause SIBO (bacterial overgrowth) and other issues. Many gut problems can be helped by switching over to whole gluten-free grains and whole foods, and avoiding the processed "junk" foods, even if they are gluten-free.

[Felipe]

28 minutes ago, Scott Adams said:

Eating sugar and processed flours/starches can cause SIBO (bacterial overgrowth) and other issues. Many gut problems can be helped by switching over to whole gluten-free grains and whole foods, and avoiding the processed "junk" foods, even if they are gluten-free.

I believe that is the test that they give you something to drink and then measures your breath bacteria from a tube type of thing correct? I had one done last time I visited GI but perhaps I need a new one just to check for that... Or get busy with some garlic and oregano oil.

[Scott Adams]

Yes, I think that is the test.