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Omg...i Might Be On To Something


Rachel--24

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Fiddle-Faddle Community Regular

I'm very interested in the discussion about antacids, as I'm on Nexium. I tried "weaning off" to Zantac, but the rebound reflux did not improve and actually got worse as the week wore on, so I went back on Nexium. I've had reflux since high school, but didn't know what it was until I was 25. I hate the idea of being on meds for it, but hate the reflux even worse. I already sleep elevated, and if I have anything like lemonade or orange juice, I mix 1 part juice with about 10 parts water, I don't drink alcohol or coffee, so I don't know what else to do. While it did get somewhat better after I went off gluten, it didn't go away or even mostly go away. :( I do have a hiatal hernia, but it's not huge.

If anybody has had good luck getting rid of such severe reflux after 30 years, please let me know...

Oh--about the water-drinking issue--I used to drink more than 8 glasses of water a day, because I was always thirsty. When I went off gluten--the constant thirst stopped--to the point where I sometimes get a bit dehydrated before I realize that I should drink. I still wake up thirsty, though. Obviously, there's cause-and-effect going on there--but durned if I know why gluten would cause excessive thirst (without diabetes or something like that).

Thanks for letting me parachute in here! :)


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Guest Robbin

:) Thanks, Judy, for the kind words and warm thoughts. You are a princess :) .

I am wondering if the carbohydrate fermentation is the chicken or the egg? I mean is the high histamine the cause of so many intolerances or do the intolerances cause the histamine levels to stay high? Also, I seem to become resistant to antihistamines and have to take larger doses after awhile, or change to another. Has anyone else had this problem? Maybe I should alternate?

I have been so glutened by the whole family trip that I feel like I am at the start all over again. Sick with major D, bleeding bowels again, burning urination (anyone else get that?) and every single bone and muscle feels like I've been hit by a truck. Please not too much sympathy as I am also a weepy boohoo-ey mess-just need a little advice esp. on getting this out of my system FAST. If I didn't have the hypoglycemia so bad, I would just drink poland springs by the gallon and not eat for two or three days. No matter what I do, I cannot get rid of this constant nausea and ugh pain and may have to resort to taking one of dh's sleeping pills tonight. All advice extremely welcome :) . btw-I edited a few posts way back for reasons of ds 's throwing fit over mentioning them, and to help anyone who has to sort through to find info :)

Alison, I also have the reflux problems for almost as long-am interested in this issue too. Good question.

TheDave Newbie
Oh and Rachel - if that guy actually bothers to read this 110 page book, at least you know he's really interested. LOL, or maybe he just has way too much time on his hands :lol:

:lol:

AndreaB Contributor

Dave,

Better be careful going back :ph34r: ....you may never come out. :unsure: ...need a map.

Rachel did mention that the first part of the thread had a lot of important scientificness though.

miamia Rookie
I don't know Rachel, maybe this is why they always put everyone on enzymes?

The carb issue is one I have also been battling. I know that when the function of our intestinal tracts has been compromised that there is abnormal fermentation of sugars in the gut. So basically yeah, like you said, all the carbs we eat ferment. I just can't go with out them I have no energy and that's when I have wasting, I burn my own tissue away eating like that.

It's darned if you do, darned if you don't

Hopefully they will have enough urine to work with, that would not be good if you have to do it over. I will keep my fingers crossed that all will go well.

Of course you can do what Judy did and tell them to stick it if they ask you to do it again :lol:

Julie-

I am sorry it was systemic not systematic oral enzyme.

I feel this way about so many things damned if you do damned if you don't . Every diet I am supposed to follow recommends cutting out carbs but I know my body needs them. Ican feel it. I feel really bad this morning and so frustrated with everything I ma doing I just feel like I should be getting some sort of positive results and I am getting nothing. I do not know what to do thats why I have started researching again but it just seems like I ma going in circles. Sorry I had to rant alittle I ma just so frustrated.

Miamia

AndreaB Contributor

Miamia,

Hugs to you. I can feel your frustration and I would be frustrated too. Didn't you just start the Keto? I thought that took awhile to start getting noticeable results. Don't give up! You will get to the bottom of this....it took some time to get sick.....it will also take some time to heal.

dlp252 Apprentice
If you ever leave this thread... birthday pictures with gluten-free birthday cake can be found here...

:lol: Cool on the cake, great pictures.


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Green12 Enthusiast
I wonder if one can have hives without the spots...aren't hives red spots? I don't get the red spots until AFTER I've scratched the heck out of myself. <_<

I think they can also be red splotchy patches, I found this:

Hives (medically known as urticaria) are red, itchy, raised areas of skin that appear in varying shapes and sizes. They range in size from a few millimeters to several inches in diameter. Hives can be round, or they can form rings or large patches. Wheals (welts), red lesions with a red “flare” at the borders, are one manifestation of hives.

Do any of you have experience with Prevacid? My doc prescribed a daily pill & I took it for a while & then my prescription ran out. When I stopped I had ferocious burning, WAY worse than before I started, & having been down that rebound road with Sudafed, I've decided I'm not comfortable taking something with such wicked rebound. It might actually be okay if you eased off as you describe, but no one warned me about that....

Leah

Sorry Leah, I don't know anything about Prevacid, it seems they are putting everyone on it now though.

If you ever leave this thread... birthday pictures with gluten-free birthday cake can be found here...

Open Original Shared Link

:D:P:D:P

Great pictures Vincent, thanks for sharing. And a belated Happy Birthday to your son :)

evie Rookie

I wonder if one can have hives without the spots...aren't hives red spots? I don't get the red spots until AFTER I've scratched the heck out of myself. <_<

[/quote

Donna; Don't you think the hives are there ready tp pop out and it just takes the scratching to pop them out?

I have wondered if we might have swelling a bit like hives in our tummies when it hurts from eating a problem food or?? <_< We all want more like instant release from these problems but that just is not happening. Here it is ragweed season, it is getting a good start; since we had late spring rain it has flourished and is to be a BIG season. I am starting to get gooiness around my eyes + itching and occsional earaches so I may have to get back on my antihistamine. Have heard of many having summer colds that I think are allergy problems, hope that does not descend on me. The cold ?? or whatever I had late winter was less hard to manage than usual (PTL) and I got by without Dr. help!! :)

That is one thing having Celiac disease has helped me with!! anyone else had improvement in other areas of their life after Celiac dx?? Have a good day all...evie :)

Green12 Enthusiast
I'm very interested in the discussion about antacids, as I'm on Nexium. I tried "weaning off" to Zantac, but the rebound reflux did not improve and actually got worse as the week wore on, so I went back on Nexium. I've had reflux since high school, but didn't know what it was until I was 25. I hate the idea of being on meds for it, but hate the reflux even worse. I already sleep elevated, and if I have anything like lemonade or orange juice, I mix 1 part juice with about 10 parts water, I don't drink alcohol or coffee, so I don't know what else to do. While it did get somewhat better after I went off gluten, it didn't go away or even mostly go away. :( I do have a hiatal hernia, but it's not huge.

If anybody has had good luck getting rid of such severe reflux after 30 years, please let me know...

Oh--about the water-drinking issue--I used to drink more than 8 glasses of water a day, because I was always thirsty. When I went off gluten--the constant thirst stopped--to the point where I sometimes get a bit dehydrated before I realize that I should drink. I still wake up thirsty, though. Obviously, there's cause-and-effect going on there--but durned if I know why gluten would cause excessive thirst (without diabetes or something like that).

Thanks for letting me parachute in here! :)

Hi Fiddle Faddle, so sorry about the severity of your reflux :( I didn't really experience mine until after I went gluten-free, don't know what that is all about. But I am beginning to really think there is a connection between dietary histamine and the breakdown of the digestive process and reflux. As I think I mentioned, I have not had reflux since I went on to a low-histamine diet and began taking Claritin short term.

Maybe there is hope yet for those of us suffering with reflux!

queenofhearts Explorer
I think they can also be red splotchy patches, I found this:

Hives (medically known as urticaria) are red, itchy, raised areas of skin that appear in varying shapes and sizes. They range in size from a few millimeters to several inches in diameter. Hives can be round, or they can form rings or large patches. Wheals (welts), red lesions with a red “flare” at the borders, are one manifestation of hives.

Sorry Leah, I don't know anything about Prevacid, it seems they are putting everyone on it now though.

Great pictures Vincent, thanks for sharing. And a belated Happy Birthday to your son :)

When I have had hives, they were less spots than blotches... just kind of everywhere. I don't get them often but when I do, they sure do itch!!!! Heat makes them much worse by the way so if you have a flare up try to stay cool.

I've decided to stay away from the Prevacid, at least until I see my doctor again & talk about the rebound issue.

Green12 Enthusiast
:) Thanks, Judy, for the kind words and warm thoughts. You are a princess :) .

I am wondering if the carbohydrate fermentation is the chicken or the egg? I mean is the high histamine the cause of so many intolerances or do the intolerances cause the histamine levels to stay high? Also, I seem to become resistant to antihistamines and have to take larger doses after awhile, or change to another. Has anyone else had this problem? Maybe I should alternate?

I have been so glutened by the whole family trip that I feel like I am at the start all over again. Sick with major D, bleeding bowels again, burning urination (anyone else get that?) and every single bone and muscle feels like I've been hit by a truck. Please not too much sympathy as I am also a weepy boohoo-ey mess-just need a little advice esp. on getting this out of my system FAST. If I didn't have the hypoglycemia so bad, I would just drink poland springs by the gallon and not eat for two or three days. No matter what I do, I cannot get rid of this constant nausea and ugh pain and may have to resort to taking one of dh's sleeping pills tonight. All advice extremely welcome :) . btw-I edited a few posts way back for reasons of ds 's throwing fit over mentioning them, and to help anyone who has to sort through to find info :)

Alison, I also have the reflux problems for almost as long-am interested in this issue too. Good question.

Good question Robbin. I think that there are multiple factors going on, our digestion becomes compromised and all of the enzymes and other things that are manufactured in the gut, for example the DAO enzyme that breaks down dietary histamine before it is released into the circulatory system, is unable to do its job. When histamine levels are so high in the body I think it makes us more reactive to everything.

So sorry you got glutened on your trip. I would just get right back to your gluten-free diet and allow yourself the time to recover. Take good care of yourself, stay hydrated, eat as whole foods as possible, get as much rest as you can. That would be my advice. Feel better soon :)

:lol:

Hi The Dave, where you been? Are you going to join us in the ville 2, down in the gab section? Less scientificness and ovary talk :lol:

Julie-

I am sorry it was systemic not systematic oral enzyme.

I feel this way about so many things damned if you do damned if you don't . Every diet I am supposed to follow recommends cutting out carbs but I know my body needs them. Ican feel it. I feel really bad this morning and so frustrated with everything I ma doing I just feel like I should be getting some sort of positive results and I am getting nothing. I do not know what to do thats why I have started researching again but it just seems like I ma going in circles. Sorry I had to rant alittle I ma just so frustrated.

Miamia

Thanks for the correction mia mia, I will look into these Systemic Oral Enzymes- sounds interesting.

Sorry you are feeling so bad, I understand your frustration. And please don't hesitate to rant, that is what we are all her for, to support one another.

Have you at least got some basic foods that you do ok with? I find at the most difficult times if I go back to the basics and start with those, then add in one thing a at time to see if it agrees with me. Just a thought.

Miamia,

Hugs to you. I can feel your frustration and I would be frustrated too. Didn't you just start the Keto? I thought that took awhile to start getting noticeable results. Don't give up! You will get to the bottom of this....it took some time to get sick.....it will also take some time to heal.

I didn't think Mia Mia started on the keto Andrea, I was thinking it was Armetta...but you might be right.

For some reason the board won't let me respond to evie's post.

Hi evie! So good to see you. I heard that about ragweed too, that it is really high levels all over and everyone around me seems to be sneezing and itching their eyes. I hope the antihistamine will give you some relief.

I would like to say that going gluten-free has cured all my ills, but I am still struggling with other food intolerances/allergies. But I am hopeful once I get that all figured out that I will great :)

Rachel--24 Collaborator
Oh and Rachel - if that guy actually bothers to read this 110 page book, at least you know he's really interested. LOL, or maybe he just has way too much time on his hands

:lol:

:o

The kid in the movie "Home Alone"...Maucauly Culkin...that's me right now. :o

:ph34r:

Rachel--24 Collaborator
If you ever leave this thread... birthday pictures with gluten-free birthday cake can be found here...

Open Original Shared Link

Thanks for sharing Vincent. :) That kid of yuors is such a cutie and that cake....OMG. :o

Sorry...I just get like that around cake and ice cream. :ph34r:

I am wondering if the carbohydrate fermentation is the chicken or the egg? I mean is the high histamine the cause of so many intolerances or do the intolerances cause the histamine levels to stay high?

My opinion is that in my case...its the histamine causing the problems...not the foods. The histamine levels are too high so natuarally I'm reacting to any excess histamines I'm taking in. Once I've reached my threshhold and my body just cant take any more....I'll start reacting to everything in my environment.

But I am beginning to really think there is a connection between dietary histamine and the breakdown of the digestive process and reflux. As I think I mentioned, I have not had reflux since I went on to a low-histamine diet and began taking Claritin short term.

I think so too Julie....no reflux for me either. I get it big time with too much chocolate, too many carbs. I had it bad when I had the sweet potato and yam fest last month too. I was eating like 8 sweet potatoes a dfay plus brown rice, avocados and a bunch of high histamine fruits. I also still think the sweet potatoes had Auxigro in them. I'm probably more sensitive to the Auxigro when I'm all maxed out with the histamines. Thtas what I'm starting to think...just like I start reacting to all toxic substances...such as perfumes...it makes sense I would also react to the MSG in the Auxigro.

Good question Robbin. I think that there are multiple factors going on, our digestion becomes compromised and all of the enzymes and other things that are manufactured in the gut, for example the DAO enzyme that breaks down dietary histamine before it is released into the circulatory system, is unable to do its job. When histamine levels are so high in the body I think it makes us more reactive to everything.

Yeah Julie....thats exactly what I'm thinking. Reduce the levels...tolerance goes up. I dont know what to do about the DOA enzyme though. I havent seen anything about reversing a deficiency? Have you?

Hi The Dave, where you been? Are you going to join us in the ville 2, down in the gab section? Less scientificness and ovary talk :lol:

Yeah Dave...no need to be lingering around here reading stuff you shouldnt be reading. Sheeeesh. :rolleyes:

Julie,

Miamia is on the Keto right now. Armetta is still waiting for the pharmacy to get hers.

I cant remember who suggested polenta? Leah?? Anyways, I just tried it...it was yummy. :D

I actually didnt pull a Rachel this time...I still have half left. I'm gonna cut waaaay down on the carbs. Last summer I was totally of carbs for 4 months. Seriously, no cheating or anything. Not a single grain and no starchy veggies at all. I dont know how I did it but it was working...I didnt have any headaches or head swelling, no reflux...nothing like that. I also had an abundance of energy...I was like the energizer bunny.....building stuff and doing all kinds of home improvement and yard work. All day, every day.

I would get reactions out of the blue though and then take a week or so to get well again. Now I know why....I was eating spinach, avocados, tomatos, eggplant, fish, canned tuna....etc. These particular foods always did make me way worse but at the time I couldnt connect the dots.

I'm betting if I went on the same diet again but took out those foods....I'd feel great.

AndreaB Contributor

Rachel,

It sounds like you may be on to something. :D

dlp252 Apprentice
This is where my focus is as well...I wonder how they can identify a deficiency (or can they)? Another thing I've been thinking about is carbs...particularly starches like potatoes, yams, rice, all that stuff. I get histamine reactions from too many carbs. I've read that too many carbs can lead to a rise in histamine levels...due to intestinal fermentation. We all know we are damaged and therefore arent digesting like a healthy person. This might explain why I did better on my candida diet....no carbs. I didnt have any of the head stuffiness type symptoms at all back then...no headaches either.

I'm wondering if the intestinal damage has created a DOA deficiency and on top of that with slowed digestion, due to both damage and low thyroid function (in my case), there is now a toxic level of histamine constantly circulating in the bloodstream.

We know that anything "fermented" = high histamines. So....if we cant digest starches very well they will ferment and in turn the histamine levels will rise. It makes sense to me. When I eat alot of starchy foods is when I get that strange sweet smell on my skin. Back when I was really researching the candida stuff I used to think of this smell as something fermenting inside me. Maybe I was right? If so....I wonder how it can all be fixed?

Okay, this makes sense to me...the two times in the last 4 years that I felt the best was when I was doing the lower carb anti-candida/anti-yeast diet. I KNOW I eat too many carbs now, I can always feel it when I eat too many, and I've been feeling it a lot lately.

I've been Rachelling my corn tortillas! :ph34r::lol:

AndreaB Contributor
I've been Rachelling my corn tortillas! :ph34r::lol:

:lol::lol:

dlp252 Apprentice
I'm very interested in the discussion about antacids, as I'm on Nexium. I tried "weaning off" to Zantac, but the rebound reflux did not improve and actually got worse as the week wore on, so I went back on Nexium. I've had reflux since high school, but didn't know what it was until I was 25. I hate the idea of being on meds for it, but hate the reflux even worse. I already sleep elevated, and if I have anything like lemonade or orange juice, I mix 1 part juice with about 10 parts water, I don't drink alcohol or coffee, so I don't know what else to do. While it did get somewhat better after I went off gluten, it didn't go away or even mostly go away. :( I do have a hiatal hernia, but it's not huge.

If anybody has had good luck getting rid of such severe reflux after 30 years, please let me know...

Oh--about the water-drinking issue--I used to drink more than 8 glasses of water a day, because I was always thirsty. When I went off gluten--the constant thirst stopped--to the point where I sometimes get a bit dehydrated before I realize that I should drink. I still wake up thirsty, though. Obviously, there's cause-and-effect going on there--but durned if I know why gluten would cause excessive thirst (without diabetes or something like that).

Thanks for letting me parachute in here! :)

Parachute in any time you'd like, lol. I'm still working on clearing the reflux...I usually don't have heartburn, but my esophagus was damaged on my first endoscope, and actually several years ago when another doctor (allergic) looked down my throat (that wasn't fun, lol), so I know there is reflux. Up until recently I never had any burning...so this is new for me. <_<

Also, I seem to become resistant to antihistamines and have to take larger doses after awhile, or change to another. Has anyone else had this problem? Maybe I should alternate?

I go "off" my antihistamines every so often...I try to go off for a week or two, and have managed as long as a month. I started doing that because usually they help me sleep but I started noticing that after I'd been on them for a while, they would actually work the opposite...if I go off them once in a while, it seems to help. So maybe switching serves the same purpose?

Rachel--24 Collaborator
Rachel,

It sounds like you may be on to something. :D

:lol: Yeah....story of my life. :rolleyes:

dlp252 Apprentice
I think they can also be red splotchy patches, I found this:

Hives (medically known as urticaria) are red, itchy, raised areas of skin that appear in varying shapes and sizes. They range in size from a few millimeters to several inches in diameter. Hives can be round, or they can form rings or large patches. Wheals (welts), red lesions with a red “flare” at the borders, are one manifestation of hives.

Thanks...that may be what I'm having...they're not super red though, just slightly "pink".

Rachel--24 Collaborator
I've been Rachelling my corn tortillas! :ph34r::lol:

OMG...I've been Racheling my own corn tortillas too! The other day I ate two! Not two tortillas.....two packages of tortillas. :o Needless to say I'm in histamine hell right now. Not to mention all the rice bread. <_<

dlp252 Apprentice
When I have had hives, they were less spots than blotches... just kind of everywhere. I don't get them often but when I do, they sure do itch!!!! Heat makes them much worse by the way so if you have a flare up try to stay cool.

Yep, definitely worse when it's hot...if sun directly hits my legs, it's almost unbearable. But it also happens in winter, so the heat isn't the only thing going on...maybe they're so much more itchy now because it's been so hot this summer.

AndreaB Contributor
OMG...I've been Racheling my own corn tortillas too! The other day I ate two! Not two tortillas.....two packages of tortillas. :o Needless to say I'm in histamine hell right now. Not to mention all the rice bread. <_<

:ph34r::o

Poor you. :( We really need to work on this Racheling thing.

penguin Community Regular
Yep, definitely worse when it's hot...if sun directly hits my legs, it's almost unbearable. But it also happens in winter, so the heat isn't the only thing going on...maybe they're so much more itchy now because it's been so hot this summer.

DRIVE BY

Aren't rashes that get worse in the sun a symptom of lupus?

queenofhearts Explorer
Yep, definitely worse when it's hot...if sun directly hits my legs, it's almost unbearable. But it also happens in winter, so the heat isn't the only thing going on...maybe they're so much more itchy now because it's been so hot this summer.

No, the heat doesn't cause them, but it does make them feel 100 times worse. My doctor actually warned me against getting too "enthusiastic" with my hubby when I had my last outbreak!!! I thought that was a bit personal! But cool showers, a fan, &c. can help keep the misery at bay.

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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