gluten-free 6 Years - Still Horrible Symptoms - Lost 20% Body Weight

[theOk]

Hello,

I’m not sure if anyone has ever had a similar experience or could offer some advice but I’d really appreciate it. I’m a mid 20s male who was diagnosed as celiac at 19 through blood work and endoscopy. I’ve maintained a strict gluten-free diet the entire time and had an endoscopy a few weeks ago that did not show any signs of celiac, meaning my diet has been good. It did show inflammation in my stomach and cracks in my stomach lining. They’re not sure what’s causing that. 
 

I have been going to go doctors constantly as my body honestly feels like there’s something very very wrong. I’ve dropped 20% of my body weight in a little over a month, tested positive for Rheimatoid factor and a 2.4 on h.s. CRP. My vitamin D levels are now normal as I’ve supplemented. 
 

I keep getting cysts all over and weird red bumps on my arms that always leave scars. I get them almost daily and don’t know why. Just had a surgery to remove a ruptured cyst. One main concern is I am *always* sick. Basically once a week I get a bad cold that lasts the entire week, so I’m almost always sick. I miss so much work due to constantly feeling horrible. 
 

They did more tests and don’t think I have lupus or RA but my doctors have no clue. Autoimmune diseases and other serious illnesses run in my family. So do thyroid issues. 
 

any help anyone one could offer would be greatly appreciated because im not sure if this will just keep getting worse. 

[trents]

Welcome to the forum, theOK!

Are you on any prescription medications?

[theOk]

12 minutes ago, trents said:

Welcome to the forum, theOK!

Are you on any prescription medications?

Thank you!

I take Emgality for migraines, Viibryd and Seroquil for mental health, Pantoprazole to slow down damage to my stomach. (New prescription) and promethazine or zofran for nausea. I also take a multivitamin and 5000 IU vitamin D daily. 

[trents]

I'm concerned about the pantoprazole. As strange as it may seem, GERD is often caused by low stomach acid (i.e., high PH). Proton Pump Inhibitors like Pantoprazole raise the PH even higher such that you still have reflux but you don't notice it. In addition, raising the PH of the stomach and the gut interferes with the normal digestion of food and uptake of nutrients which can generate vitamin and mineral deficiencies, weakened bones, etc. Raising the PH of the stomach/gut also increases the risk of enteric bacterial infections. You might want to research signs/symptoms of low stomach acid and the risks associated with long term PPI use. I was on a PPI for about 18 years and managed to wean myself off of them but it was not easy.

Many of the problems you describe strike me as being autoimmune related. I wonder if you shouldn't talk to your doctor about getting put on some kind of steroid (like prednisone) to calm your immune system down for a bit. Sometimes you can break a feedback loops in this way and restore your body systems to a calmer state which may or may not have positive long term effects.

I would also encourage you to add in a high-potency B-complex supplement, zinc and magnesium. Costco's Kirkland and Nature Made lines are good choices and will state on the bottle if they are gluten free. Many of their products are gluten free.

[theOk]

1 minute ago, trents said:

I'm concerned about the pantoprazole. As strange as it may seem, GERD is often caused by low stomach acid (i.e., high PH). Proton Pump Inhibitors like Pantoprazole raise the PH even higher such that you still have reflux but you don't notice it. In addition, raising the PH of the stomach and the gut interferes with the normal digestion of food and uptake of nutrients which can generate vitamin and mineral deficiencies, weakened bones, etc. Raising the PH of the stomach/gut also increases the risk of enteric bacterial infections. You might want to research signs/symptoms of low stomach acid and the risks associated with long term PPI use. I was on a PPI for about 18 years and managed to wean myself off of them but it was not easy.

Many of the problems you describe strike me as being autoimmune related. I wonder if you shouldn't talk to your doctor about getting put on some kind of steroid (like prednisone) to calm your immune system down for a bit. Sometimes you can break a feedback loops in this way and restore your body systems to a calmer state which may or may not have positive long term effects.

I would also encourage you to add in a high-potency B-complex supplement, zinc and magnesium. Costco's Kirkland and Nature Made lines are good choices and will state on the bottle if they are gluten free. Many of their products are gluten free.

2 minutes ago, trents said:

I'm concerned about the pantoprazole. As strange as it may seem, GERD is often caused by low stomach acid (i.e., high PH). Proton Pump Inhibitors like Pantoprazole raise the PH even higher such that you still have reflux but you don't notice it. In addition, raising the PH of the stomach and the gut interferes with the normal digestion of food and uptake of nutrients which can generate vitamin and mineral deficiencies, weakened bones, etc. Raising the PH of the stomach/gut also increases the risk of enteric bacterial infections. You might want to research signs/symptoms of low stomach acid and the risks associated with long term PPI use. I was on a PPI for about 18 years and managed to wean myself off of them but it was not easy.

Many of the problems you describe strike me as being autoimmune related. I wonder if you shouldn't talk to your doctor about getting put on some kind of steroid (like prednisone) to calm your immune system down for a bit. Sometimes you can break a feedback loops in this way and restore your body systems to a calmer state which may or may not have positive long term effects.

I would also encourage you to add in a high-potency B-complex supplement, zinc and magnesium. Costco's Kirkland and Nature Made lines are good choices and will state on the bottle if they are gluten free. Many of their products are gluten free.

That is all great information, thank you so much. The Pantaprozole was prescribed right after my endoscopy showed inflammation and stomach lining cracks. The doctor said it should slow down further damage until they figure out what’s wrong. I also thought it seemed like an autoimmune disease, especially since I was diagnosed as celiac late. They tested for Rheumatoid factor which was 15. Technically positive but not alarming to the rheumatologist. ANA was negative also . I’m going to ask for a thyroid check.

Also thank you for the vitamin recommendations. I take the Kirkland multivitamin but will get some other from them. Sorry if my formatting is weird I’m on mobile, but I really appreciate you taking the time to help. I’ve been quite worried about all this 

[trents]

You are on several prescription meds. Many prescription meds block uptake or deplete stores of vitamins and minerals and physicians often do not make their patients aware of this. So, I think you would be wise to increase your supplementation.

[theOk]

8 minutes ago, trents said:

You are on several prescription meds. Many prescription meds block uptake or deplete stores of vitamins and minerals and physicians often do not make their patients aware of this. So, I think you would be wise to increase your supplementation.

Okay, definitely. I will pick up the ones you recommended at Costco and perhaps take an additional multivitamin in the morning. I take the multivamin and vitamin D at night with other medications, not sure if that matters or not. Thank you 

[trents]

It's important to choose a magnesium supplement that is readily assimilable. Magnesium glycinate or Magnesium citrate are preferred to magnesium oxide, for example. Magnesium oxide is what you commonly find in stores and is inexpensive and probably what you will find at Costco. I take the glycinate form and get it from Amazon. The more assimilable forms are less likely to cause loose stools. Magnesium oxide is sold over the counter as a laxative known as Milk of Magnesia. Whatever form you get, start with a low dose and titrate up to a level that starts to cause loose stools then back it down. https://www.healthline.com/nutrition/magnesium-types

[Pamela Rivas]

On 11/29/2022 at 7:04 AM, theOk said:

Hello,

I’m not sure if anyone has ever had a similar experience or could offer some advice but I’d really appreciate it. I’m a mid 20s male who was diagnosed as celiac at 19 through blood work and endoscopy. I’ve maintained a strict gluten-free diet the entire time and had an endoscopy a few weeks ago that did not show any signs of celiac, meaning my diet has been good. It did show inflammation in my stomach and cracks in my stomach lining. They’re not sure what’s causing that. 
 

I have been going to go doctors constantly as my body honestly feels like there’s something very very wrong. I’ve dropped 20% of my body weight in a little over a month, tested positive for Rheimatoid factor and a 2.4 on h.s. CRP. My vitamin D levels are now normal as I’ve supplemented. 
 

I keep getting cysts all over and weird red bumps on my arms that always leave scars. I get them almost daily and don’t know why. Just had a surgery to remove a ruptured cyst. One main concern is I am *always* sick. Basically once a week I get a bad cold that lasts the entire week, so I’m almost always sick. I miss so much work due to constantly feeling horrible. 
 

They did more tests and don’t think I have lupus or RA but my doctors have no clue. Autoimmune diseases and other serious illnesses run in my family. So do thyroid issues. 
 

any help anyone one could offer would be greatly appreciated because im not sure if this will just keep getting worse. 

Hi,

it’s really frustrating .

By chance have you had your thyroid levels checked? Also, could you be lactose intolerant?Do you know your IGE blood levels? A family member was diagnosed with celiac disease in teens. Fast forward 10 years and my relative discovered that they cannot eat out at all due to cross contamination. Recently, had an endoscopy which was normal but lining of stomach showed mild gastritis. Relative asked to monitor blood IGE levels to lower them to normal. When diagnosed they were in 100’s then managed to get down to single digits but recently numbers are in 20’s. Relative is also checking liver functions. Also, just started Natures Bounty probiotics. Also did an elimination diet and found that they did significantly better 100% dairy free. Also every single spice and product they  type into search bar and add celiac.com to see if anyone had a reaction. 

Good luck to you. 
Celiac Advocate

[Posterboy]

On 11/29/2022 at 9:55 AM, theOk said:

Thank you!

I take Emgality for migraines, Viibryd and Seroquil for mental health, Pantoprazole to slow down damage to my stomach. (New prescription) and promethazine or zofran for nausea. I also take a multivitamin and 5000 IU vitamin D daily. 

theOk,

Pantroprazole is a powerful acid blocker.....and could be leading to your low Vitamin D....and the need to supplement.

When we block our stomach acid it is not  uncommon to be low in our Minerals and our Fat Soluble Vitamins like Vitamin D.

I also suspect your Seroquil as a potential drug that could be interfering with you Vitamin D levels.

See this article about how Seorquil (along with many other medicines) can cause Low Vitamin D levels....

https://www.pharmacytimes.com/view/drug-interactions-with-cyp3a4-an-update

Also the use of PPI's are thought to be able to trigger Celiac disease.

I am not suprised you are still having horrible symptom's.....

By taking a B-Complex frequently you can help cut back on your need for you PPIs.....

I am trying to help my brother with the same issue now....

It is the PPI's that causing your horrible symtpom's to linger despite being gluten free all these years IMO.

HHMI debunked the idea of it is High Stomach that is the problem.....that leads to ulcers....almost 20 years ago.....

When all along it is low stomach acid instead.....causing most of your horible GI problems...but it is still a common trope  you hear when it comes to stomch issues.

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

IN FACT, acid blockers will often make your GI symptom's worse as you are experincing....

It is called NERD instead of GERD....

Not suprisingly this was found to be true almost 10 years ago.....but PPIs are as popular as ever.

http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html

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

Posterboy,

[Elizabeth Butler]

Definitely not a doctor here, but I read medical charts for a living so I see constantly what patients are reporting and what doctors are treating with. I also studied for a short time to be a dietitian till I saw what information I was to “push” then I quit school. Doesn’t make me “know” anything more than you do, but it makes me empathetic to your cause. I love health, I love people, and I want everyone to feel their best and your young enough to be my son. The mother in me screams respond to this young man desperately trying to feel better. I agree with other posters those PPI are over used, miss used and MAY possibly cause more problems than what they are intended to treat. You are way too young to be so miserable. I’m so sorry you are dealing with this. It will get better DONT give up. Keeping searching and you are your best advocate for YOUR health. Sometimes keeping it simple is best. Also so as not to interfere with treatments that ARE WORKING! Becareful on multiple excessive vitamins. I read lots of charts where someone takes a good thing and decides more is better. Not true! I understand and agree that while having issues with GI tract you are likely coming up short on actually getting those both due to your health issues and possibly your age. I don’t know you but I do know younger people tend to throw caution to the wind with their health but especially what goes in their mouth. Your going to want to eat like an old picky person for awhile till you get things re-aligned. Better days are ahead. 
focus on the basics of good health and it can’t hurt you it can only help! Hydrate with filtered/reverse osmosis water. Your body needs lots of water for sooo many things it’s so overlooked by EVERYONE. Your sensitive digestive tract doesn’t need the chemicals in flavored waters, pop( diet sodas), city water( heavy chlorination by products/ excessive fluoride, and be wary of teas/herbals as these while in small amounts may not have any side effects; start drinking them all day because your bored and they can be potent and potent when mixed with prescription medications. With your GI ISSUES already looked at by a physician there isn’t likely to be a quick fix, nor a miracle cure. This is going to be a long road but enjoy the ride your going to be well prepared for decades down the road. The gut, immune system, and brain chemicals are all intertwined. Your going to have symtoms in all areas and as you or your doctor treat one area symptoms are going to appear in another intertwined area. You should start thinking of food like you do prescription drugs. Not a pleasant thought for anyone but especially for a young soul who just wants to feel like everyone else their age! For this advice I am sorry if no one has said before so bluntly…. No smoking, no alcohol, low sugar, no gluten, dairy is definitely a real possibility of a no go for awhile or at least attempt a dairy free for a bit to see if symptoms improve. The GI replaces its first endothelial cell layer at an astounding rate( DONT remember the exact but it’s quick). An elimination diet while not pleasant is TEMPORARY AND ONLY MEANT TO BE TEMPORARY! One cannot use pills/supplements and only one food group for the rest of one’s life. Not only will one suffer of boredom, and subsequently go on binges but nutrition will suffer as well. Even in hospitals those nutrients going through a tube do not constitute true nutrition. They are temporary..while the patient heals. Use only very good resources for information. I know your searching for help and support here but seriously everything you Google and I know you do, who hasn’t??? Lol..do it with Mayo Clinic, NIH( national institute of health) or other very credible medical research credentials right behind what you type in. A lot of other stuff is pulled from those anyway and also has added misc fluff/advertising added in. Save yourself and go right to sources doctors pulls from. That will go along way to help you sort out your meds, your symptoms, general health advice. 
 From a personal standpoint having some GI/skin issues/brain chemical issues myself at a young age I’ve managed to come to some conclusions about MY BODY. Actually I know it won’t be the same mine is female, and hormones play an active role in the human body, but my tips are generalized for all I think. This may not work for you and as YOU LEARN, you KNOW BEST FOR YOU! 
1. drink clean water 2 eat clean food by that I mean as little processed as possible with one exception..while you are in crisis stage: eat your vegetables and fruits cooked for awhile. Reason I say this is: eating healthy has some trade offs. What did you think it was perfect??? Lmao. Never. Nothing is. Everything is a trade off! Fresh foods are high risk for communicable diseases( most of which affect GI tract/and do harm to your liver), fresh foods carry lots of bacteria…u don’t need those while you are trying to problem solve. They can come back later..yes your losing some minerals/vitamins..but those fresh produce do anyway after they’ve been picked, washed, trucked, processed( to look good in the supermarkets), UV Light, sitting for awhile waiting to be eaten. Go easy on the meat. Try to stick to beef..good quality beef. Yes it’s more expensive your going to make a trade off. Eat less of it, buy better quality and it’s an equal price to what your buying now. Do you eat take out?? Stop as much as possible. Avoid it like the plague. Sometimes you have to..be real choosy. Real choosy with what you order. Think about the least processed hottest food there you can order. Eat it. Enjoy your friends, and family ect and focus on your mission..

your celiac you should already be acquainted to food labels..if not practice practice. If the can, box, jar, bag has more than 5-7 items. I would consider it a higher risk the greater the number. Greater risk of cross contamination, not knowing what it is, can’t find information on what it is, and do your really want to spend money on food that isn’t helping you? Or your looking at, purchase, only to get it home find the info and then realize you technically shouldn’t eat it. What a bummer. Don’t set yourself up to struggle. Going gluten free is already hard enough( I also follow a gluten free diet( not a celiac tested can’t afford to go to doctor) but decided it was worth a shot. I feel better at 40 than I did at 20. I will never go back to the diet I ate as a teen. You couldn’t pay me to eat like that! Do you exercise? Are you like I was ? Over exercising? Did you know you could be allergic to exercise. Yes I’m not nuts look it up. It is an allergic response to the “act/physical response during exercise. I’m also an asthmatic. You mentioned allergies which is why I brought that up. If you overkill anything it’s not a good thing. It can lead to a immunospressed state and over all body inflammation..which includes your GI system. How much fiber do you get? This is going to sound really gross and weird to say to a stranger but sharing is caring. Your poop is important. It will tell you how your GI tract is doing!! Pay attention to when, how often, what it looks like, it’s texture, color, and over all its qualities. Keep a diary of what you eat and what your poop looks like. That should also help narrow down what foods are potentially giving your GI SYSTEM a real problem. Research what poop of a healthy GI TRACT SHOULD RESEMBLE. make your diet match the result and you will feel better…

also ask doc/ or purchase a blood sugar testing kit. You need to watch out for high blood sugars. Diabetes isn’t just for old, fat, or hereditary conditions it’s for EVERYONE. It will take prisoner anyone. I wouldn’t wish it on my worst enemy. Did you know it can be linked to over 20 conditions without so much as the doctor stating the two conditions are linked?? For example delayed transit emptying of your bowels can be related to diabetes…who would’ve thought of those two together but they are. Gastroparesis check it out..That’s serious business..and something else I’ve noticed is. It doesn’t seem to be readily diagnosed until it’s in worst stages. I won’t project as to why.. I don’t have those medical answers. So check your blood sugars randomly, mornings, before and hour after meals, before and after exercise along with diary of what you ate, and when for at least a couple weeks. Then go over the results yourself, and with your doctor. Also one last thing for good overall health.. actually two. Sorry. Get enough sleep. Cant be over talked about. It’s the only break your GI TRACT gets..and your brain. The two are connected remember?? 
last: look up PRAL VALUES OF FOODs. PRAL stands for potential renal acid load. Eat as many negative Value foods as your palate can tolerate. Eat more negatives than positives. Your kidneys affect adrenals; adrenals work with ALL of your endocrine glands. Hormones are like the theater set and prop crew. Without them the actors are really able to have a show. Plus your kidneys help control the water, mineral content of your body. You need them functioning at their best to work with your GI to reduce poisons, and toxic substances. The ones the body makes and the ones that we accidentally consume or the ones we negligently consume. Take good good care of your kidneys.it’s not easy to get another organ of any sort. Also one last last thought and this is going yo upset doctors of course. Again I am not one but..it begs the question. If your GI Tract is sensitive, having all sorts of issues, and technically is controlled by the bacteria in your gut should you be Willy nilly thrown on antibiotics that recklessly kill ALL OF THEM?? I would be very diligent about researching and asking as many questions of your providers when they decide to put you on antibiotics. What is the purpose of, have they confirmed what bacteria you have, have you done your homework on that bacteria?? What is said result? Do you really need antibiotics for that cold you have or are you just in hurry to feel better in a day or two..could you use an alternative therapy with the same result.. ask questions then ask MORE QUESTIONS. You know your getting somewhere medically when you have more questions than answers!! 😂😂

whew I know that was long winded but it sure felt good to share and hopefully help anyone..even someone else who read this. I hope you feel better young man and take care of yourself for the rest of your life. No one is going to do it for you! 

 

 

[Flash1970]

On 11/29/2022 at 7:04 AM, theOk said:

Hello,

I’m not sure if anyone has ever had a similar experience or could offer some advice but I’d really appreciate it. I’m a mid 20s male who was diagnosed as celiac at 19 through blood work and endoscopy. I’ve maintained a strict gluten-free diet the entire time and had an endoscopy a few weeks ago that did not show any signs of celiac, meaning my diet has been good. It did show inflammation in my stomach and cracks in my stomach lining. They’re not sure what’s causing that. 
 

I have been going to go doctors constantly as my body honestly feels like there’s something very very wrong. I’ve dropped 20% of my body weight in a little over a month, tested positive for Rheimatoid factor and a 2.4 on h.s. CRP. My vitamin D levels are now normal as I’ve supplemented. 
 

I keep getting cysts all over and weird red bumps on my arms that always leave scars. I get them almost daily and don’t know why. Just had a surgery to remove a ruptured cyst. One main concern is I am *always* sick. Basically once a week I get a bad cold that lasts the entire week, so I’m almost always sick. I miss so much work due to constantly feeling horrible. 
 

They did more tests and don’t think I have lupus or RA but my doctors have no clue. Autoimmune diseases and other serious illnesses run in my family. So do thyroid issues. 
 

any help anyone one could offer would be greatly appreciated because im not sure if this will just keep getting worse. 

The first thing I would do is check all medications for gluten contamination. I am a pharmacist,  so I don't say this lightly.  Costco vitamins may not be free of gluten.  The main thing that might help is to stop all grains.  Read Wheat Belly Diet.  This is a book written by a cardiologist.  Very interesting. Before quitting grains I was on zantac,  e.t.c.  Now, I haven't taken anything for years.  Check all soaps and creams.  Use allergen free laundry soap.  You didn't say anything about your thyroid.  Is it normal? That can wreak havoc on your body.  Skin,  digestion,  body weight.  I'd assume they checked it,  but if not get your level tested.  If thyroid issues are in your family,  good chance you're going to have a problem.  Also remember cross contamination.  If you eat out a lot, you're getting gluten. That dressing made with mayonnaise,  probably was used to spread mayo on bread.  Small things do make a difference. 

[trents]

14 minutes ago, Flash1970 said:

 Costco vitamins may not be free of gluten.

If they are, they will be clearly labeled as such. At least I can say that with regard to their Kirkland Signature and Nature Made lines. They are not all necessarily gluten free but if they are they will be clearly labeled as such.

[Nmrrt]

Have you been tested for Gardner's Syndrome?

[Liquid lunch]

On 11/29/2022 at 3:04 PM, theOk said:

Autoimmune diseases and other serious illnesses run in my family.

@theOk Autoimmune disease is a symptom of clinical endocannabinoid deficiency which is hereditary. Some people have over active endocannabinoid systems, they don’t get stressed or ill. Lucky them.

Your endocannabinoid system is responsible for regulating sleep, digestion, healing, composition of the microbiome, mood, ect. ect. If it’s down regulated you are at higher risk of crohns, Parkinson’s, ptsd, addiction, fibromyalgia, ibd, migraines, autism, epilepsy ect. ect.

Are the other ailments in your family on this list?

It is treatable with diet, I’ve made a post about it here..

 

[Liquid lunch]

On 11/29/2022 at 3:04 PM, theOk said:

I keep getting cysts all over and weird red bumps on my arms that always leave scars

I’ve got a good remedy for this that’s better than anything you can get from a pharmacy..

1 part neem essential oil

2 parts tea tree essential oil

3 parts olive oil

make sure the essential oils are not synthetic, it’s amazing for anything skin related.