Sick and losing the will to live

[David Dawson]

I am totally gluten free but am feeling more sick than ever 12 months after going gluten free with a very swelled abdomen and can hardly eat or drink with chronic fatigue but I'm convinced it can't be gluten because iv done everything possible to eradicate gluten and crosstamination. Have you any idea what the problem might be? It's ruining my life and I'm losing the will to live.

[Ennis-TX]

You might try a elimination diet, try cutting down to 1-3 food items (nothing processed think plain meat, eggs no seasoning) and only eat that for a few days. Change them out 1 at a time every few days trying a different food item to see how you react. It is very common to celiacs to also get other food sensitivities.  Heck some Celiacs react to oats just like wheat/barley/rye. And common problems are dairy, soy, legumes, onions, garlic, nightshades (potatoes, peppers, eggplant), and corn
Also keep a food journal and keep track of the exact food you had, how it was prepared and how you feel and BM patterns. This way you can find what might be causing your issues.
Also be sure to double check the newbie 101 section to double check if you missed something, while at it go over any other products, supplments, or medications you use and double check them.

[cyclinglady]

What does your follow-up testing indicate?  Are your celiac  antibodies on a downward trend?  If not, look to your diet and take Ennis’s valuable advice.  If you have not seen a doctor lately, you should.  Your symptoms could be something other than a gluten exposure.  

[GFinDC]

That does sound pretty miserable David.  Generally i think people have at least some improvement over the course of a year.  Although they are not always "all better".

There can be many reasons for GI distress, but per Cycleslady, re-checking celiac antibodies is a great first step.  It is very possible to have gluten in your diet and not realize it.  An ultra simple diet as Ennis suggested is a good idea for troubleshooting food issues.

There are other potential causes though and they should be checked by a GI if your gliaden antibodies are low.  Ulcers, Crohn's disease, sibo, gall bladder issues etc can all causes GI system problems.  Or it could be a food you don't think is hurting you.  Dairy is a frequent problem as are oats, nuts, eggs, corn, nightshades etc.  Any of the top 10 major food allergens and more can cause issues.

[Kate333]

Hi David.  The stomach bloating can be caused by "accidental" G exposure but also by IBS, SIBO (bacterial overgrowth), which many folks with celiac disease also have (including me).  Your doctor can recommend further testing to rule those in or out and treat.  A low FODMAP diet and targeted antibiotics (Rifaximin) can help these.  Since it's been a year, you should also get updated blood, EGD/biopsy to assess your progress, esp. in light of continued symptoms.  If you're not eating ENTIRELY naturally (only fresh meats, veggies, fruits) and ENTIRELY at home, you may indeed be getting G.  Same thing happened to me.  I just ditched ALL processed/packaged foods to avoid the even remote risk of G exposure.  

Most concerning is the chronic fatigue, loss of "the will to live".  These are classic symptoms of severe depression/anxiety (I have also been there), so I hope you will let your doctor know ASAP.  

[DJFL77I]

might be Gastritis…...…. You should get new blood work done and an Endoscopy...   

I'm only 6 weeks in.. today is 6'th week.....  still have upset stomach..  but I do have some Gastritis which the Dr saw with Endoscopy...…   I've only been eating fresh meats and potatoes and veg's and fruit...  only processed things i've had lately  ( if they are processed)   is Bryers Vanilla Lactose free Gluten free ice cream... and Daisy cottage cheese.. which is probably too acidic......

[David Dawson]

Thank you so so very very much to everyone who's been so so kind as to reply to my post on here.i cant even put into words just how much its appreciated.it seems I posted on here in the height of having had a few weeks where I was just in and out of bed just so poorly to the point of even being out of breath with a really low heart rate as well.i had a seizure 6 months back through complications and stopped breathing with everything,my thyroid is under-active but I was on 2x what I should now be taking now my diets been changed.i really really appreciate all the advice and thank God himself for every one of you really kind souls,please don't anyone forget that.... I'm improving a lot by doing the thing of eating only gluten free foods and whole foods preparing all foods myself and eating only food I select and prepare.I'm improving day by day.it seems I got very depressed and was very constipated as well which was making me very poorly.having got so low in mood just trying to drag myself from one basic necessity of life to another I'd lost my perspective over the bigger picture as my days became solely about the day itself.hard to believe but with an improved mindset I can see my judgement was very clouded in the height of depression. I'm improving with my thyroid and iv just started taking small walks.honestly cant thank everyone for all your input,thank you all so so much for taking the time to show me such kindness,I didn't think a reply would follow.....I was glutening myself I'm certain of that now having researched foods I thought were ok and there's a few offending items prepared in the same factory as wheat barley rye or oats. If I don't get a full recovery then gluten free labelled foods will go,do the food diary with trial and error and look at other possible sensitivities and I'll go on while foods only. For now I'm seeing the benefits I needed and just in the nick of time because I honestly was starting to struggle to justify such an existence but I'm a carer so I had to just keep going.thank you all so much,peace of the lord

Dave

[Janjamey]

Get tested for SIBO. Read Breaking the Viscous Cycle by Elaine Gotschel & follow the Specific Carbohydrate Diet as it is described in the book ( there are groups online that have changed the original diet - stick to the book). Its not easy but if you perservere its worth it. But do get tested for SIBO first as that needs antibiotic treatment if you have it. 

[Carl P]

On 7/14/2020 at 1:14 PM, David Dawson said:

I am totally gluten free but am feeling more sick than ever 12 months after going gluten free with a very swelled abdomen and can hardly eat or drink with chronic fatigue but I'm convinced it can't be gluten because iv done everything possible to eradicate gluten and crosstamination. Have you any idea what the problem might be? It's ruining my life and I'm losing the will to live.

 

[Carl P]

I had to go way beyond simply gluten free before my issues resolved.  When I went gluten free 10 years ago I only got maybe 50% well.  Then I eliminated all processed food from my diet and I got a bit better, maybe to 60%.  Then I eliminated all grains, even the “gluten free” ones, and got up to 75% well.  A good resource on this is A book by Dr Peter Osborne, titled “Grain-free, Pain-free”.  Then I eliminated other problematic foods like nuts, seeds, and nightshades, including potatoes and tomatoes.  I got up to 85% well.  Finally I went full carnivore and only eat 100% grass fed, grass finished and wild caught fish.   I realized I had been reacting to the grain the animals were fed.  After going full carnivore now for 8 months, my digestive issues have fully resolved and I feel great.  No stomach issues whatsoever. I am gaining muscle and strength and losing fat.  A good resource on going full carnivore is Dr Kevin Stock’s website Meat Health and his Facebook group Carnivore Corner.  

[Posterboy]

On 7/14/2020 at 1:14 PM, David Dawson said:

I am totally gluten free but am feeling more sick than ever 12 months after going gluten free with a very swelled abdomen and can hardly eat or drink with chronic fatigue but I'm convinced it can't be gluten because iv done everything possible to eradicate gluten and crosstamination. Have you any idea what the problem might be? It's ruining my life and I'm losing the will to live.

David,

For your depression you might try some Magnesium Citrate with meals.....Magnesium has been studied in people that have depression.

It can help with chronic fatigue.

Here is the study in Depressed people......I have taken it myself....and really recommend it for depression issues...

Entitled "Rapid recovery from major depression using magnesium treatment"

https://pubmed.ncbi.nlm.nih.gov/16542786/

Here is the study of Magnesium and fatigue issues...

Entitled "The Epstein-Barr Virus, Magnesium and ME/CFS Connection"

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

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

Posterboy,

[DJFL77I]

On 7/29/2020 at 9:04 PM, Carl P said:

I had to go way beyond simply gluten free before my issues resolved.  When I went gluten free 10 years ago I only got maybe 50% well.  Then I eliminated all processed food from my diet and I got a bit better, maybe to 60%.  Then I eliminated all grains, even the “gluten free” ones, and got up to 75% well.  A good resource on this is A book by Dr Peter Osborne, titled “Grain-free, Pain-free”.  Then I eliminated other problematic foods like nuts, seeds, and nightshades, including potatoes and tomatoes.  I got up to 85% well.  Finally I went full carnivore and only eat 100% grass fed, grass finished and wild caught fish.   I realized I had been reacting to the grain the animals were fed.  After going full carnivore now for 8 months, my digestive issues have fully resolved and I feel great.  No stomach issues whatsoever. I am gaining muscle and strength and losing fat.  A good resource on going full carnivore is Dr Kevin Stock’s website Meat Health and his Facebook group Carnivore Corner.  

 

you don't eat fruit ?

 

[Carl P]

7 hours ago, DJFL77I said:

 

you don't eat fruit ?

 

Only meat, water and salt.  For salt, I buy the brand Real Salt. It is gluten-free on the label.  This is the only salt I found to which I do not react.  

[DJFL77I]

 

Where do you get Fiber from?

that's not a healthy diet. Why would you not eat Fruit? and Vegetables

[Carl P]

1 minute ago, DJFL77I said:

lol what

Where do you get Fiber from?

that's not a healthy diet

No need for fiber.  I still have BMs just like before.  It is the most healthy diet I have ever tried.  And, as I said, all my digestive issues and autoimmune issues are gone and for the first time in decades I feel well.  

[DJFL77I]

do you take vitamins?

[Ennis-TX]

5 minutes ago, Carl P said:

No need for fiber.  I still have BMs just like before.  It is the most healthy diet I have ever tried.  And, as I said, all my digestive issues and autoimmune issues are gone and for the first time in decades I feel well.  

 

To be honest going carnivore for me was the best diet. I had been paleo for years, stopped eating fruit due to blood sugar issues, then removed vegetables that caused issues with Ulcerative colitis....and finally removed nuts to save money. I am honestly doing better then I can ever recall energy wise and with how light I feel. When ever I go back to having some nuts or eat vegetables I feel more tired and will have gas issues. | use  multivitamins also but most people on the carnivore diet just eat liver and other organ meats which contain the nutrients you would get from plants.
BMs are steady, just need to be sure to drink plenty of water and for me I take extra electrolytes.

PS everyone has different diets that work them, this can vary based on your genes and where your ancestors were from, you gut biome, and your bodies disposition for certain foods.

Edited August 1, 2020 by Ennis_TX

[Carl P]

1 minute ago, DJFL77I said:

do you take vitamins?

A few.  However, Meat is complete nutrition, so really no need to supplement.  All pills, Including vitamins, contain fillers of some kind and I react To all of them. If I do supplement, then I buy the supplements in pure powder form with no fillers from bulksupplements.com

[Carl P]

8 minutes ago, Ennis_TX said:

 

To be honest going carnivore for me was the best diet. I had been paleo for years, stopped eating fruit due to blood sugar issues, then removed vegetables that caused issues with Ulcerative colitis....and finally removed nuts to save money. I am honestly doing better then I can ever recall energy wise and with how light I feel. When ever I go back to having some nuts or eat vegetables I feel more tired and will have gas issues. | use  multivitamins also but most people on the carnivore diet just eat liver and other organ meats which contain the nutrients you would get from plants.
BMs are steady, just need to be sure to drink plenty of water and for me I take extra electrolytes.

PS everyone has different diets that work them, this can vary based on your genes and where your ancestors were from, you gut biome, and your bodies disposition for certain foods.

You are correct.  Every person is unique and a diet for one person will not work for everyone.  But, most people don’t realize that being carnivore is an option.  I did not, anyway, until after struggling for many years.  

[DebJ14]

I was originally diagnosed in 2007.  I did well at first, but by the end of that year I seemed to react to everything, but at least my migraines and rashes were gone, and I lost 50 pounds so I considered it a victory.

 I had extensive allergy and food sensitivity testing and 23 items made the list of my culprits. I cut them out for 2 full years to give my gut a chance to heal and slowly added them back one at a time.  It was pretty obvious that chocolate, all forms of yeast, casein, blueberries and beef were never coming back into my diet because the reactions were quick and brutal.  Other items on the list could be tolerated in small doses eaten only occasionally.  But, I decided even they were just not worth it.

I went grain free in 2012 and that definitely helped with my back pain level,  but I wouldn't say I was 100%.  

But, what did the trick for me was to go Keto in 2018 and to incorporate water fasting.  I added healthy fats Avocado, coconut and olive oils) to the mix as well as getting rid of starchy vegetables and fruit, and all forms of sugar, which only seemed to ferment in my gut. I also went to all organic produce and switched to organic, pasture raised poultry and eggs, grass fed lamb and only wild caught fish. I also discovered I could eat butter, as long as it was grass fed.  I switched to using monkfruit and stevia as my sweeteners.  I later added some sugar alcohols after testing them out. I found Swerve is fine, but other brands are not. Allulose, malitol and xylitol cause horrible reactions.

I discovered that after a 5 day water fast I have no pain whatsoever, even though I have a completely blown out disc and 3 bulging discs as well as spinal stenosis.  When the pain starts to come back instead of popping a pill I do another water fast.   I have never felt better, but obviously something I am still eating is causing inflammation since it goes away when I cut out everything.

All those numbers docs like to look at like weight, BP, blood sugar, insulin levels, cholesterol ratio and triglycerides and CRP levels are good, even though I am pushing 68 and according to allopathic physicians should be falling apart and need multiple prescriptions drugs.

Food can be medicine or poison. It behooves you to get tested to see what your issues are because going gluten-free is just the first step in a long process of healing.  I have been at it for 13 years now and I feel better at 67 yrs 11 months than I did at age 20.

[DJFL77I]

I think I'll just start living off air and sunlight.. 

[Whitepaw]

On 7/14/2020 at 2:14 PM, David Dawson said:

I am totally gluten free but am feeling more sick than ever 12 months after going gluten free with a very swelled abdomen and can hardly eat or drink with chronic fatigue but I'm convinced it can't be gluten because iv done everything possible to eradicate gluten and crosstamination. Have you any idea what the problem might be? It's ruining my life and I'm losing the will to live.

I went thru a lengthy rough patch a few years ago. I kept lists of what I ate daily, so I could look for trends, and eliminate suspect foods. Took the lists to every GI appointment.  I was down to maybe 7 foods that caused me no problems. Based on this, and my complaints of bloating and heartburn, my Dr spotted a FODMAP sensitivity and acid overproduction.  I went on appropriate diets, and walked after every meal.  It was slow but steady progress.  Your problem may be different than mine, but tracking foods and showing that to your Dr might fill in the blanks he or she needs to help you. 

[David Dawson]

Thank you everyone who gave me your input in regards to my symptoms I thank you all from the bottom of my heart.i have finally improved with just being super strict around making sure no gluten was in my diet to the best of my ability which has finally started paying off.i wouldn't eat anything I haven't sourced and prepared myself and i live with someone who isn't gluten free and I wasn't as on the ball as I should have been which iv addressed.thank you once again for all the concern and support,really appreciate it so much.i really hope everyone is in good health in good spirits and in a peaceful place.god bless you all,peace be unto you.

[ravenwoodglass]

1 hour ago, David Dawson said:

Thank you everyone who gave me your input in regards to my symptoms I thank you all from the bottom of my heart.i have finally improved with just being super strict around making sure no gluten was in my diet to the best of my ability which has finally started paying off.i wouldn't eat anything I haven't sourced and prepared myself and i live with someone who isn't gluten free and I wasn't as on the ball as I should have been which iv addressed.thank you once again for all the concern and support,really appreciate it so much.i really hope everyone is in good health in good spirits and in a peaceful place.god bless you all,peace be unto you.

Thank you for letting us know that you are feeling better. Gluten can take us to some pretty dark places. Good to hear you are coming out of yours. When I get glutened it helps me to keep reminding myself that it is the gluten and soon things will be brighter.

[Connie Hess]

On 7/14/2020 at 1:14 PM, David Dawson said:

I am totally gluten free but am feeling more sick than ever 12 months after going gluten free with a very swelled abdomen and can hardly eat or drink with chronic fatigue but I'm convinced it can't be gluten because iv done everything possible to eradicate gluten and crosstamination. Have you any idea what the problem might be? It's ruining my life and I'm losing the will to live.

Food allergies. Need extensive testing on food allergies. I can’t believe everything I’m allergic to. I bloat up and get sick for days from eating something one time. It’s pretty much anything healthy, I’m allergic. Sugar and junk food, I’m fine. It’s not fair! Now thru it all my potassium is too high so I’ve even got to cut out the fruit and most veggies I’m not allergic to. My dream is to be able to go to a restaurant, sit down and order anything I want and eat like normal people. Restaurants are out for me. Bell peppers and shellfish send me to the ER. Soy is almost there and cinnamon is working it’s way up there too!