There's hope for you yet!

[Chris the Celiac]

I think he did the blood tests to see if I had any antibodis to begin with because ny first doctor never did that. My first doctor didnt do anyything other than an endoscopy😂 I realized, Im either sebsitive to salicylates or Im just far too overley stressed. Which I am, but still. Im actually very scared to eat really anything becaus last night, I ate broccoli and almost passed out and today I have had severe brainfog, feels like I cant walk right, ect. It hasnt been fun😂

[DJFL77I]

7 hours ago, Chris the Celiac said:

 had severe brainfog, feels like I cant walk right, 

thats celiac..

it causes brainfog.. dizziness.. off balance..

it should get better with time

 

[Chris the Celiac]

Its really not. It was plain broccoli. I even tested it. I went out of my way to eat gluten and nothint happened. I ate broccoli and almost passed out abd it was just bad all around. I promise gluten isnt my culprit rn😂

[DebJ14]

Sorry Chris, but you are in denial.  Thinking that the gluten is not impacting your health is just wishful thinking.  You appear to be a young guy in your picture.  Take it from an old lady who was misdiagnosed until the age of 54, damage is being done to parts of your body you never dreamed of. 

When you present to GP's, gastroenterologists, dermatologists, neurologists, OB's and orthopedic surgeons with constant gut issues, joint pain, severe migraines, rashes, fatitgue, multiple miscarriages and ataxia  year after year and no one ever mentions gluten, come back and talk.  I only wish someone had gone straight to the diagnosis.  I was prescribed drug after drug for each symptom.  All they did was mask the symptoms. No, I did not have a shortage of steroid cream, Cafergot, Toprol, Maalox, Pepto, Pepcid, Advil, Voltaren and a host of other drugs.  When I went gluten-free and then ultimately totally grain free and also took out all foods I was allergic or sensitive to, only then did I feel wonderful.  

The longer you are off gluten, the worse the reaction is.  Exactly one year ago I was accidently glutened while on vacation after 13 years of not having any.  Within 30 minutes I had explosive diarrhea, projectile vomiting, a rash and a headache that would not quit.  For the next week I felt like I had been hit by a truck.  A year later and I am still having digestive issues that had been gone for many years.  My doctor said my gut was damaged by that one incident and it will take more time to heal because of my age.  

You should be thankful you  got diagnosed, not out there scarfing Kit Kats.  Definitely look into the fructose issue.  My son cannot eat any fruit at all due to his significant inability to digest fructose.  But, he also knows he can't eat gluten.

  You say no one else in the family actually has it.  Well, have they actually been tested?  My doctor insisted my sons, grandchildren and parents get tested when I turned up positive.  Surprise, surprise 1 son, 2 grandchildren and 1 parent all tested positive for celiac.  The other son and parent had gluten sensitivity.  Even my unrelated daughter in law decided to get tested even though she thought she was fine, and her pathology and blood work was the worst.  She insisted her parents get tested and her mother has it too.  The autopsy reports for 2 of my first cousins  showing undiagnosed celiac as a contributing cause of death.   They  both died at age 50 from T Cell Lymphoma, something Celiacs are more likely to develop than the general population.  

[Chris the Celiac]

Yeah, they have been tested. The only reason I purposely ate gluten was to know my reaction to it bc initially, fruits and other foods made me have evry symptom that led me to an endoscopy. I wondered what my gluten symptoms were and I yet have to figure that out. My GI is looking into silent celiacs as far as celiacs goes. The worst reaction I had, thinking it was gluten related, was broccoli and bellpeppers. Both fresh. Im just very confused as to what id going on and frankly, terrified to eat anything because I dont know what is giving me these reactions 

[DebJ14]

Then get yourself tested for food sensitivities and food allergies.  Many, many people who have issues with gluten cannot consume dairy products or yeast.  I got tested and am highly allergic to yeast and milk and have pretty much immediate reactions to them.  However, there are also 23 other foods that I have a delayed reaction to.  Once I cut all the offending foods from my diet, I quickly felt much better.  After more than a year I tried adding the foods I am sensitve to back in and found I can tolerate some of them once in a while. But, others are off limits because they provoke a reaction, sometimes 48 hours later.

Keep a food journal and record every single thing you put in your mouth to see if you see a pattern.  I was lucky that I had a great nutritionist help me get through all this and designed a diet without all the offending foods that was nutritionally dense.

[Chris the Celiac]

I can drink milk and eat cheese still. I did allergy testing abd didnt have a single allergy to the foods I noticed made me feel off. Ive avoided those foods for a while now. I think Im going to talk to a nutritionalist after my GI. Thank you for the idea! I wish I judt had a handbook of what I can and cant eat because franikly, I really need to eat something without being absolutley terrified😅

[GFinDC]

On 11/2/2020 at 7:25 PM, Chris the Celiac said:

I can drink milk and eat cheese still. I did allergy testing abd didnt have a single allergy to the foods I noticed made me feel off. Ive avoided those foods for a while now. I think Im going to talk to a nutritionalist after my GI. Thank you for the idea! I wish I judt had a handbook of what I can and cant eat because franikly, I really need to eat something without being absolutley terrified😅

Hi Chris,

It's good the tests didn't show any food allergies!  Allergic reactions are actually caused by a different immune cell type and they can be deadly.  I imagine you have heard of peanut allergy?  Anyway, food allergies are not fun.  Celiac disease is an immune response involving IgA and IgG cells.  They act differently and affect different areas of the body than IgE (allergy) cells.  So allergy tests can be a good thing to have done but they don't show anything about celiac disease.  Allergy tests do eliminate one possible symptom cause though.

I am curious what your doctor said about doing the celiac gliaden antibody tests after you have been eating gluten-free for a while.  Did he explain that the tests won't be accurate?

[Chris the Celiac]

I did eat gluten for a week before the testing, he didnt say what labs he wanted ran on me. But I did figure out one of my problems! I wasnt eatint enough carbs. I also figured out any foods that are harder to digest like broccoli, steak, green beans, and what not. I cant eat😂 They are too hard for me to digest I guess. Im focusing on easier to digest foods like eggs, spinach and rice for the mean time. Im going to speak to a nutrionalist after to see what more I can find thats easier to digest! 

[moog8]

On 11/2/2020 at 7:15 PM, DebJ14 said:

Sorry Chris, but you are in denial.  Thinking that the gluten is not impacting your health is just wishful thinking.  You appear to be a young guy in your picture.  Take it from an old lady who was misdiagnosed until the age of 54, damage is being done to parts of your body you never dreamed of. 

When you present to GP's, gastroenterologists, dermatologists, neurologists, OB's and orthopedic surgeons with constant gut issues, joint pain, severe migraines, rashes, fatitgue, multiple miscarriages and ataxia  year after year and no one ever mentions gluten, come back and talk.  I only wish someone had gone straight to the diagnosis.  I was prescribed drug after drug for each symptom.  All they did was mask the symptoms. No, I did not have a shortage of steroid cream, Cafergot, Toprol, Maalox, Pepto, Pepcid, Advil, Voltaren and a host of other drugs.  When I went gluten-free and then ultimately totally grain free and also took out all foods I was allergic or sensitive to, only then did I feel wonderful.  

The longer you are off gluten, the worse the reaction is.  Exactly one year ago I was accidently glutened while on vacation after 13 years of not having any.  Within 30 minutes I had explosive diarrhea, projectile vomiting, a rash and a headache that would not quit.  For the next week I felt like I had been hit by a truck.  A year later and I am still having digestive issues that had been gone for many years.  My doctor said my gut was damaged by that one incident and it will take more time to heal because of my age.  

You should be thankful you  got diagnosed, not out there scarfing Kit Kats.  Definitely look into the fructose issue.  My son cannot eat any fruit at all due to his significant inability to digest fructose.  But, he also knows he can't eat gluten.

  You say no one else in the family actually has it.  Well, have they actually been tested?  My doctor insisted my sons, grandchildren and parents get tested when I turned up positive.  Surprise, surprise 1 son, 2 grandchildren and 1 parent all tested positive for celiac.  The other son and parent had gluten sensitivity.  Even my unrelated daughter in law decided to get tested even though she thought she was fine, and her pathology and blood work was the worst.  She insisted her parents get tested and her mother has it too.  The autopsy reports for 2 of my first cousins  showing undiagnosed celiac as a contributing cause of death.   They  both died at age 50 from T Cell Lymphoma, something Celiacs are more likely to develop than the general population.  

Hi!

I wondered, I have been "glutened" a couple of times in the last almost 3 years. I find that i'm beginning to actually feel afraid of crumbs in other peoples houses, if I go to see my father he lives on bread and peanut butter and makes a lot of cakes, also my boyfriend tries hard to keep things separate at home but I can't help but feel like it would be better if there was just no chance at all that I could ingest any of this. How much do you worry about this kind of thing? Its the same with washing up (we don't have a dishwasher) but I always wash pans etc with different water and sponge. Im just not sure how paranoid i'm being/becoming.  My last reaction, was to shampoo with wheat germ in and i felt like I was actually dying of nausea and all the other stuff followed and lasted 3 weeks! 

 

To add to your families testing stories, my cousin is celiac and also my nan on the other side of the family- she is violently sick especially if she east oats! it was actually her that lead me down the right path as i always believed i was just gluten intolerant, that i wasn't ill enough to be celiac- But i was ill every single day for almost 10 years, I think there's a lot of people who still don't believe  its real, sadly. 

[moog8]

 

5 hours ago, Chris the Celiac said:

I did eat gluten for a week before the testing, he didnt say what labs he wanted ran on me. But I did figure out one of my problems! I wasnt eatint enough carbs. I also figured out any foods that are harder to digest like broccoli, steak, green beans, and what not. I cant eat😂 They are too hard for me to digest I guess. Im focusing on easier to digest foods like eggs, spinach and rice for the mean time. Im going to speak to a nutrionalist after to see what more I can find thats easier to digest! 

Hi Chris,

 

When i was still eating gluten and other grains (rice, oats etc) I would react very badly to any of the brassica family of vegetables- eg cauliflower and broccoli. Since being totally gluten and grain free i can now eat these things without issue, they are hard to digest if your gut is at all damaged (by gluten). The thing is, you may feel like you aren't reacting to gluten because the reaction doesn't happen straight away, it can take me 48 hours to have a reaction. I found this very difficult to pinpoint at first, I would assume its gluten you are reacting to and completely stop eating it ASAP if I were you, then you can start to see what other foods may be a problem for you, things may be a problem for a while and when you start to heal you may be able to introduce foods back in (like dairy etc). I have to avoid all grains and dairy and all foods that have grain derivatives in too, even supplements and citric acid in tinned tomatoes! 

[Chris the Celiac]

The wierd thing is, I did wait days to see what my gluten symptoms are! My GI suggested Silent Celiac. Whats weird is Ive been able to eat dairy products without a problem? This whole time I was able too. So far, broccoli is the absolute worst for me too ear. Rice I really need. I need the carbs. I havent been eating a lot because I dont know what to eat thats easily digested. If I eat broccoli, its like it trips a sensor and my body become overwhelmed and it gives me brain fog, cant walk right, ect. Its not fun. Green beans dont do but I can still feell theyll do that if I eat enough! The blood test he ran should still have antibodies, if thats what he ran. The antibodies take quite some time to go down

[GFinDC]

Hi Chris,

Here's a snippet from the Cure Celiac FAQ at the University of Chicago Celiac Center.  There is lots of additional information on their page for people learning about celiac disease.

****************************************************************************

https://www.cureceliacdisease.org/faq/my-blood-tests-came-back-negative-but-id-only-been-eating-gluten-for-about-a-month-i-also-had-an-endoscopic-biopsy-after-three-months-of-eating-gluten-where-they-found-patchy-infiltration-w/

Question

My blood tests came back negative, but I’d only been eating gluten for about a month. I also had an endoscopic biopsy after three months of eating gluten where they found patchy infiltration with lymphocytes. My doctor doesn’t want to diagnose me with celiac disease because the blood tests were negative. Should I seek a second opinion?

Answer 

If you had been gluten-free for a long time and only ate gluten for one month prior to your blood work then it may not have been accurate. In other words, you probably have celiac disease. Consider having another endoscopic biopsy after one year on a strict gluten-free diet to see if complete healing of the mild inflammation has occurred. If this is the case, then a celiac disease diagnosis could be considered confirmed. June, 2013

****************************************************************************

 

Edited November 6, 2020 by GFinDC

[Chris the Celiac]

1 hour ago, GFinDC said:

Hi Chris,

Here's a snippet from the Cure Celiac FAQ at the University of Chicago Celiac Center.  There is lots of additional information on their page for people learning about celiac disease.

****************************************************************************

https://www.cureceliacdisease.org/faq/my-blood-tests-came-back-negative-but-id-only-been-eating-gluten-for-about-a-month-i-also-had-an-endoscopic-biopsy-after-three-months-of-eating-gluten-where-they-found-patchy-infiltration-w/

Question

My blood tests came back negative, but I’d only been eating gluten for about a month. I also had an endoscopic biopsy after three months of eating gluten where they found patchy infiltration with lymphocytes. My doctor doesn’t want to diagnose me with celiac disease because the blood tests were negative. Should I seek a second opinion?

Answer 

If you had been gluten-free for a long time and only ate gluten for one month prior to your blood work then it may not have been accurate. In other words, you probably have celiac disease. Consider having another endoscopic biopsy after one year on a strict gluten-free diet to see if complete healing of the mild inflammation has occurred. If this is the case, then a celiac disease diagnosis could be considered confirmed. June, 2013

****************************************************************************

 

Ill look into it! I guess I gotta go easy on my stomach! I cant eat anything thats hard to digest right now! 😂 

[Chris the Celiac]

I get another endoscopy and a colonoscopy! Quite frankly, a GFD has not helped, I tried looking for intolerances, tried cutting foods out, and still hasnt helped! Hopefully my new GI can help figure this out😪 Sorry for constant replies, I dont know how to make posts😂

[Posterboy]

On 11/2/2020 at 12:36 PM, Chris the Celiac said:

Its really not. It was plain broccoli. I even tested it. I went out of my way to eat gluten and nothint happened. I ate broccoli and almost passed out abd it was just bad all around. I promise gluten isnt my culprit rn😂

Chris the Celiac,

I have been staying away from this thread.....no particular reason.....just busy with life..... but what you are describing sounds like a Salicyte Sensitivity best known as Aspirin....

https://www.healthline.com/nutrition/salicylate-sensitivity#TOC_TITLE_HDR_2

But Many Cruciferous Vegetables are high in Salicytes including the Broccoli you mentioned.

Here is a 2nd article about it...

https://healthfully.com/506886-i-have-hives-due-to-cruciferous-vegetables.html

I would also suggest trying the "Baking Soda test" to test if you are low in Stomach acid.

https://drjockers.com/5-ways-test-stomach-acid-levels/

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

Posterboy,

[Chris the Celiac]

Thank you! Ive been trying around with Salicylates and I think thats a possibility. Im just really stressing ouy about all of this. Ive rarely been sick throughout my life so this is pretty scary to me😂  Thank you for the advice!

[Posterboy]

6 minutes ago, Chris the Celiac said:

Thank you! Ive been trying around with Salicylates and I think thats a possibility. Im just really stressing ouy about all of this. Ive rarely been sick throughout my life so this is pretty scary to me😂  Thank you for the advice!

Chris the Celiac,

Your welcome! I hope it is was helpful.

Here is another article that might help you.

https://brisbanenaturopaths.com.au/2018/12/05/three-common-food-sensitivities-youve-never-even-heard-of/

Now that you know what to potentially look for....I am sure you will figure it out.

Some Nightshades might also be a problem for you.  The Salicyte and Nightshade list(s) overlap quite a bit.

It is quite possible that those who have a Nightshade allergy also have a Salicyte allergy too!

Good luck on your continued journey!

Posterboy,

[Chris the Celiac]

Thank you! The only thing that stumps me is I can eat avocado just fine, that Im aware of anyways. I hatr this journey right now. Im going to talk to a dietician to see what more I can do!

[GFinDC]

Hi Chris,

I think you might need to consider eliminating foods for more than a few days or a week.  Our GI system needs time to adjust and heal.  Cutting out foods is a good idea but not if you are going to eat them again in few days or a week.  You really can't learn much with that approach.  Instead try eliminating entire foods groups for a month or two.  That way you actually learn more and get better results/answers.  If something is worth doing its worth doing right...

 

[Chris the Celiac]

Thats what Ive done for so long. Ive eliminated so much I dont know whats bothering me. I have wrote down lots of foods that bothered me but I dont know how to go about that. So far its grapes, kiwis, bananas, broccoli, green beans, soda, Canyon Roads gluten free bread. Im too the point where I dont know if its because Im hardcore backed up or what. I just need serious help😪

Oh also, almonds, cashew, and other nits but I figured thats a given. They are hard to digest anyways. 

[GFinDC]

Hi Chris,

Some things that should be in every celiacs' medicine cabinet IMHO are Pepto Bismol for stomach/gut pain, Milk of Magnesia for constipation, peppermint tea or Altoids for gas/bloating.

Betaine HCL is helpful for eating high protein or hard to digest foods like meats or nuts.

Psyilium husks can be helpful to provide non-digestible fiber.

You can buy all these things at your local grocery or pharmacist although you may need to order Betaine HCL online.  Swanson's or Vitacost are good places to look.

Other items to consider are gluten digestive enzymes although they are only helpful with minor amounts of gluten contamination.  They wont allow you to safely eat gluten.  CVS has Me and My Gluten Assist and there are others.  Again, they only are helpful for minor gluten contamination, not wholesale eating gluten on purpose.  They may reduce damage a little.  But they can't prevent an immune reaction from occurring.
 

Edited November 8, 2020 by GFinDC

[Chris the Celiac]

1 hour ago, GFinDC said:

Hi Chris,

Some things that should be in every celiacs' medicine cabinet IMHO are Pepto Bismol for stomach/gut pain, Milk of Magnesia for constipation, peppermint tea or Altoids for gas/bloating.

Betaine HCL is helpful for eating high protein or hard to digest foods like meats or nuts.

Psyilium husks can be helpful to provide non-digestible fiber.

You can buy all these things at your local grocery or pharmacist although you may need to order Betaine HCL online.  Swanson's or Vitacost are good places to look.

Other items to consider are gluten digestive enzymes although they are only helpful with minor amounts of gluten contamination.  They wont allow you to safely eat gluten.  CVS has Me and My Gluten Assist and there are others.  Again, they only are helpful for minor gluten contamination, not wholesale eating gluten on purpose.  They may reduce damage a little.  But they can't prevent an immune reaction from occurring.
 

Thank you! The only hard part with me is, I dont have symptoms when glutened, only food intolerances get worse I think😂😂

[Posterboy]

Chris the Celiac,

GFinDC  has given you some good advise I think.

Try some BetaineHCL it is helpful when your stomach acid is low and it is commonly low in those who have food allergies.

Your constipation can be helped by taking some Magnesium Citrate......Pill form....not liquid variety....

I would try the BetaineHCL 3 to 4 with a meal and a couple glasses of water....

When it is working as it should (BetaineHCL) it will causing frequent burping....

And a "Warm Sensation" in your abdomen....

If I remember correctly you said you used PPI's for a while....it can take up to 6 months before your body is properly making its own stomach acid again at full strength.....this could be making your constipation worse....

The more dense and compact your Stool it is....think  a Log Jam...the more likely you are to have Low Stomach Acid/Constipation...

See this link on the Bristol Stool Chart...

https://www.bing.com/images/search?view=detailV2&ccid=1gG0SqvC&id=C46C7845182BC8E1739F0CAF93624032521B7996&thid=OIP.1gG0SqvCHXZTr52AwkIB9AHaFY&mediaurl=https%3A%2F%2Fpoisonedbygiftgas.files.wordpress.com%2F2015%2F02%2Fbristol-stool-chart.png&exph=728&expw=1001&q=bristol+stool+chart&simid=608029082296975816&selectedindex=8&qpvt=bristol+stool+chart&ajaxhist=0&insmi=m

I was you 15 years ago....

See this Posterboy blog post I think it will help you.

The problem with First Line proscribing PPIs is it misses the underling causes....and often makes the existing GI problems worse than in the first place...

http://gastroaws.nclud.com/news_items/first-line-ppi-therapy-masks-underlying-conditions

The treatment for Low Stomach was studied by Prousky.....nearing 20 years ago....

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

And why taking a B-complex can help you....if you are not now taking PPIs....

I have written several Posterboy blog posts to help educate others about these connections...

Below is my Posterboy Open Letter Part 2....maybe it will help you!

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

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Chris the Celiac]

The only thing is, I only feel absolutley disgusting and sick when I dont eat gluten. All the time. Extreme nausea. I tried Mag Citrate, but I had to gonto the hospital after thay experience. It made me waaaay dehydrated. Bad. Im trying to find intolerances, but I cant pinpoint anything. Anything and everthying makes me sick, I mean that literally everything. When I had my first endoscopy, I had normal amounts of stomach acid. I also realized, to find my symptoms, I dont react at all too gluten. It makes me feel normal. Im talking with another gastro and getting another endoscopy. When I eat gluten, I dont experience any tell tell sign of celiacs at all. So, Im still eating gluten free, just trying to manage why Im so freakishly nauseated all. The. Time.