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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.

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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:

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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.

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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

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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.

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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 :)

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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 :)

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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!

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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.

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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 :)

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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:

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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.

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AndreaB Contributor

Rachel,

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

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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:

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

:lol::lol:

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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?

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Rachel--24 Collaborator
Rachel,

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

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

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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".

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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. <_<

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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.

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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.

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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?

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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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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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