Could This Be Gluten?

[aknapp1978]

Hi everyone,

I am new to this board, and I am a bit confused. I have been reading through all of your posts on the differences between celiacs and gluten intolerance. I did have my IGA and IGG tested and my doc said they came back non-celiacs. I just had an endoscopy and a colonoscopy done, but I have not gotten the results yet, but the doc said everything looked okay. Could I still have intolerance or an allergy? Below are my symptoms. It all seems like it could point to this, but everything is so contradictory that I don't even know anymore.

I know it's a long list; my apologies.

-constantly very fatigued (was just diagnosed pcos so that accounts for some of it but the meds aren't really helping the fatigue)

-constant blood sugar spikes and falls (am not diabetic but am insulin resistant because of the pcos)

-extreme bloating (rings go from too big to way too tight in an instant. Pants that are almost falling off in the morning will be too tight by night)

-insomnia (energy spikes around 10P and I cannot get to sleep no matter what)

-I don't think it is rosacia (is that the right term?) but I have had a bright red spot on my cheek for years

-very dry skin

-random hives (seem to come out of nowhere)

-random itchy red spots show up on my hands and arms

-yeast infections (could be from the pcos though)

-went completely carb free for a week and lost 15 pounds, got my period, things were going well

-very very intense stomach pain. the docs have labeled it IBS, but the symptoms seem so much worse than others with ibs. about three times a day i get blinding pain (makes me lightheaded, sweaty, weak knees). not loose stools, but it feels like there is poison in my lower gut and it is very difficult for me to release the stool although it doesn't take an abnormal amount of time - just alot of pushing.)

-low average temperature (95 degrees)

-two times ago drinking beer I was in the ER the next day with intense leg pains (only two beers)

-2 weeks ago I literally had one sip of beer and it felt like it went through my nose, my head felt like it was going to explode and ten minutes later I was dizzy, out of it, and my head got really hot and my hands were freezing to the point that when (in the car) I put them on my husband's arm to warm up, they felt like they were frost bit.

There are more, but you get the picture. I am sorry to send such a long list. I just don't know what to do or think. My husband and I were positive I had celiacs and then it came back negative. Silly as it sounds, I was disappointed because this could finally be the thing that has been wrong with me all these years and I would gladly and happily give up gluten if it meant no more stomach pain.

One other thing -- my IGE (allergic response) levels are always high. Wouldn't this mean that I was in an acute state of allergy? Could I have an allergy with these symptoms rather than an intolerance? Would the IGG and IGA show if I have an allergy?

Once again, I apologize for the long post. I have been reading through this board for a couple of weeks and you all seem very helpful and encouraging so I thought I would see what you all think.

Thanks

Amanda

[KaitiUSA]

Your IgE came back high and that is for an actual allergy. IgA and IgG are completely different reactions.

From what you are saying though it sounds like they did not run a full panel for celiac on you which would include the more accurate tests. The IgA and IgG are not the more specific ones.

I have a wheat allergy in addition to celiac so it is possible to have both. If you have an allergy(since your IgE came back high) that could be causing your symptoms.

You may also want to consider getting a gene test done to see if you hold a main gene for celiac. About 98% of celiacs have the DQ2 or DQ8 gene. There are many people with these genes that do not get it but if you have the gene it can activate celiac at any point in life. The other small percentage of celiacs have the DQ1 gene. All of the celiac genes have not been identified yet but as of now those are about the stats. And if you do not hold a gene you are 99.9% likely to never get celiac.

Another option is Enterolab where they do stool testing for gluten sensitivity, malabsorption, tTG, etc....they also do genetic testing through mouth swabs and test for not only the celiac genes but for gluten intolerance genes as well.

I would also recommend you see someone about your IgE levels coming back high because a true allergy, if really severe, can cause an anaphylactic reaction which can be fatal. So it's important you get that taken care of.

Possibly getting tested for other allergies and intolerances may be an option too.

[nettiebeads]

When did you get the b/w done in relation to your carb-free timewise? That may have skewed the results. It seems to me that gluten is definitely the enemy. But just what you have is what needs to be defined.

[RiceGuy]

I can relate to your list of symptoms, and more. At this point it could be gluten intolerence, but read this post I made a short time ago:

Open Original Shared Link

It is perhaps the most significant thing I ever did for my health, but I'm now under the impression that gluten was what triggered it all.

[nogluten-]

Omitting gluten made the biggest difference for me too. In spite of all the crohn's and sjogren's meds, after cheating recently all of my sjogren's and crohn's symptoms are back worse than ever. I had been heading towards a remission. Arg. Gluten stinks.

[Rusla]

Today I had to go back on gluten for a week for a test. Well with a small amount of gluten I had today within 10 minutes my stomach hurt and I felt disoriendted. I felt sick, dizzy and so tired I could hardly keep my eyes open. Then within a half hour my face broke out and I have to go throught this for a week.

[RiceGuy]

Today I had to go back on gluten for a week for a test. Well with a small amount of gluten I had today within 10 minutes my stomach hurt and I felt disoriendted. I felt sick, dizzy and so tired I could hardly keep my eyes open. Then within a half hour my face broke out and I have to go throught this for a  week.

<{POST_SNAPBACK}>

Who says a week?! Seems you got your answer already. Perhaps they say a week because some people react slower and/or to a lesser degree. I doubt you need to continue it at all. If the doctor want's to see the condition you're in, call for an immediate appointment. Otherwise I'd wait till the end and just have enough to get the doc to see it if that's required for some stupid reason.

[aknapp1978]

Thank-you all for your answers. I really appreciate them.

I am actually waiting to make an appointment with an allergist - I have to fill out a 7 day food log before he will talk to me.

I just got the results of my endoscopy and colonoscopy but once again they did not go far enough (according to what I am hearing on here) to detect celiac and they only did two biopsies - one of a polyp he removed and the other to test for h. pylori.

I did not have those more specialized tests - I only had the IgA and IgG. Is it really possibly to have celiacs though with both of those negative and no visible damage on the scopes?

Also, if any of you wouldn't mind asking -- what does your GI pain feel like with gluten? The closest to mine that I have ever heard was in a celiac disease book where a woman said it felt like glass. I always say like poison eating my stomach. Is this how it feels for all of you?

Maybe there is nothing wrong with me and I just have the IBS like they said, but I really sincerely do not feel that this is the case.

Thanks again!!

Amanda

[tarnalberry]

Maybe there is nothing wrong with me and I just have the IBS like they said, but I really sincerely do not feel that this is the case.

But you said you experienced symptoms right after eating gluten - that's not "there's nothing wrong with me". Please listen to your body! I understand you're finishing your food log for the doctor, but when that's done, there's no reason to keep making yourself sick!

[RiceGuy]

I am actually waiting to make an appointment with an allergist - I have to fill out a 7 day food log before he will talk to me.

Well, I don't want to give you poor advice, but if it were me, I'd stop the gluten since I know what it is doing. Then just make up the log for the rest of the week, filling it in with whatever will get the doc to listen to you. It might not be totally honest, and I don't like suggesting that at all, but heck, this is your life we're talking about here. The tricky part is showing up looking better than the log, so maybe a final glutening at the end just to make it look good, but I don't know if I'd do that. I'd call the doctor and see if you can stop now and just log in the recovery rather than logging how ill you would get. There's no reason to make yourself sicker just because of an idiot doctor.

When they do an allergy test on your skin, all they need is to apply it once, not over and over, so one glutening should be enough for them. If it's not then that's their problem. You already know how to fix it now. You will be going gluten-free for the rest of your life anyway, so I wouldn't care what the doc or anybody else says now.

That's my opinion. But what do I know. I'm just a life-long gluten sufferer who has finally found some answers when all the docs failed. I didn't go to medical school, and I don't have a wall full of fancy degrees from colleges who's primary source of funding is the pharmaceutical companies. Sorry for the rant.

[aknapp1978]

Hi everyone,

Here were my celiac test results:

Tissue transgluatinase, IGA Value <3 (Range of <5 = negative test)

IgA 146 (Range 81-463)

IgG 1061 (Range 694-1618)

This means I'm definitely negative for celiac right? Are these the most comprehensive tests? Even if not, if all of these came back normal, I am almost definitely non-celiac, correct?

I'm so confused by all of these tests and what everything means. My gp said this means I don't have celiac, and the allergist (who was a major a$$ in my opinion) said that there is no way I could have celiac if the tests were negative.

I start scratch tests next Friday for food allergies. I'm not sure what to do. It sounds kind of extreme to go off of gluten if all of my tests say I can handle gluten. I don't want to seem like a spaz by saying I have something when the tests say I can't. I was just really hoping that after all of this time, this is what it was. I know it's not a fun thing to have, but if I could have stopped the pain, skin stuff, etc just by avoiding gluten, I would have been one happy gluten-free girl

Thank-you all very much for your help,

Mandy

[Rachel--24]

Hi everyone,

Here were my celiac test results:

Tissue transgluatinase, IGA Value <3 (Range of <5 = negative test)

IgA 146 (Range 81-463)

IgG 1061 (Range 694-1618)

This means I'm definitely negative for celiac right? Are these the most comprehensive tests? Even if not, if all of these came back normal, I am almost definitely non-celiac, correct?

I'm so confused by all of these tests and what everything means. My gp said this means I don't have celiac, and the allergist (who was a major a$$ in my opinion) said that there is no way I could have celiac if the tests were negative.

I start scratch tests next Friday for food allergies. I'm not sure what to do. It sounds kind of extreme to go off of gluten if all of my tests say I can handle gluten. I don't want to seem like a spaz by saying I have something when the tests say I can't. I was just really hoping that after all of this time, this is what it was. I know it's not a fun thing to have, but if I could have stopped the pain, skin stuff, etc just by avoiding gluten, I would have been one happy gluten-free girl

Thank-you all very much for your help,

Mandy

Personally, if I were in your shoes right now I would try the diet regardless of the test results. Many people here can attest to the fact that the diet is the most accurate and foolproof test of all. Not everyone gets an "official" diagnosis...not everyone has positive bloodtests. I didn't. It did not mean it was OK for me to eat gluten. I continued to eat gluten based on the test results and I almost died because of it. The tests are not 100% reliable. You could also have non-celiac gluten sensitivity. Its not any less severe and it would still be very harmful if you were to continue to consume gluten. I think if you've never actually tried the diet you really should before you rule anything out. It cant hurt and it just might change your life....for the better.

[aknapp1978]

Rachel -

Thank-you very much for the advice. I keep going back and forth about everything. I was also just diagnosed (September) with polycystic ovarian syndrome which is a endocrine disorder. Trying to get that taken care of and this (both which would require dietary restrictions) is driving me a bit mad. That's actually why I started thinking allergy. The endo thing requires a diabetic diet. I went on it immediately, but when I went to eating 5 smalls a day (as opposed to one large one) I got really bad pain. I think maybe I was now feeding my allergen too many times a day.

I have an appointment to be tested for allergies this week. They are testing yeasts, sugars, wheat, eggs, dairy, and soy. This should tell me something, but they said I couldn't go off of any food until after these tests.

I have two more questions for anyone:

1. On Thanksgiving (a day that should have caused me major pain) I took 2 food enzymes before anything (even a glass of wine), a lactaid pill, and then 2 probiotics after every meal. My stomach felt empty (and thus a bit nauseous) all day, but besides that I didn't get bloated until very late in the day. Any idea what this could be from??

2. I had an endoscopy/colonoscopy a week or so ago. The prep stuff for the colonoscopy made me violently (throwing up) ill, but my stomach has been SO much better since then. I still get symptoms, but not three times a day. I'm thinking maybe this could point more towards an intolerance rather than an allergy. Maybe too much was in my colon and it cleaned it out? Do you think there is any validity to this theory?

Thanks again for all of your help. I ignored my gi symptoms for so many years. My dr finally said it was too much pain to ignore, and I can't believe that I may finally get some answers

Mandy

[elisabet]

Hi everyone,

I am new to this board, and I am a bit confused. I have been reading through all of your posts on the differences between celiacs and gluten intolerance. I did have my IGA and IGG tested and my doc said they came back non-celiacs. I just had an endoscopy and a colonoscopy done, but I have not gotten the results yet, but the doc said everything looked okay. Could I still have intolerance or an allergy? Below are my symptoms. It all seems like it could point to this, but everything is so contradictory that I don't even know anymore.

I know it's a long list; my apologies.

-constantly very fatigued (was just diagnosed pcos so that accounts for some of it but the meds aren't really helping the fatigue)

-constant blood sugar spikes and falls (am not diabetic but am insulin resistant because of the pcos)

-extreme bloating (rings go from too big to way too tight in an instant. Pants that are almost falling off in the morning will be too tight by night)

-insomnia (energy spikes around 10P and I cannot get to sleep no matter what)

-I don't think it is rosacia (is that the right term?) but I have had a bright red spot on my cheek for years

-very dry skin

-random hives (seem to come out of nowhere)

-random itchy red spots show up on my hands and arms

-yeast infections (could be from the pcos though)

-went completely carb free for a week and lost 15 pounds, got my period, things were going well

-very very intense stomach pain. the docs have labeled it IBS, but the symptoms seem so much worse than others with ibs. about three times a day i get blinding pain (makes me lightheaded, sweaty, weak knees). not loose stools, but it feels like there is poison in my lower gut and it is very difficult for me to release the stool although it doesn't take an abnormal amount of time - just alot of pushing.)

-low average temperature (95 degrees)

-two times ago drinking beer I was in the ER the next day with intense leg pains (only two beers)

-2 weeks ago I literally had one sip of beer and it felt like it went through my nose, my head felt like it was going to explode and ten minutes later I was dizzy, out of it, and my head got really hot and my hands were freezing to the point that when (in the car) I put them on my husband's arm to warm up, they felt like they were frost bit.

There are more, but you get the picture. I am sorry to send such a long list. I just don't know what to do or think. My husband and I were positive I had celiacs and then it came back negative. Silly as it sounds, I was disappointed because this could finally be the thing that has been wrong with me all these years and I would gladly and happily give up gluten if it meant no more stomach pain.

One other thing -- my IGE (allergic response) levels are always high. Wouldn't this mean that I was in an acute state of allergy? Could I have an allergy with these symptoms rather than an intolerance? Would the IGG and IGA show if I have an allergy?

Once again, I apologize for the long post. I have been reading through this board for a couple of weeks and you all seem very helpful and encouraging so I thought I would see what you all think.

Thanks

Amanda

Amanda,

Do you remember how high was your IGE?and how many times you had this test ?

[jenvan]

I second Tiffany--listen to your body. Sometimes tests don't tell us what we need...or what is going on inside of us. There are many here who are not a typical "Celiac" but are gluten-free b/c of what gluten does to them...

[aknapp1978]

Unfortunately, I do not know how high the IgE was. The last time was when I was in the ER (possibly due to 2 beers I had the night before) and they doc just said the CBC or whatever he took was all okay and that I just had elevated IgE which was due to an allergic reaction.

The other time (many months earlier) I had a test done by my doc and when he came in with the results he asked me if I had allergies. I told him I did (natural reaction, once I thought about it I realized that I wasn't having anything like my typical hayfever or cat reaction) so he said that must be why the IgE was high. Neither suggested an allergist, but they both mentioned it.

I'm getting really overwhelmed by all of this. I have an appointment with an endocrinologist tommorrow (for the hormone problem), with a gastroenterologist on Thursday (follow up on the scopes) and allergy appointments for testing almost every other day for two weeks starting on Friday.

This gets to be a lot. I just wish they could figure out what is wrong with me; although, with some of the tests they have run it's a very good thing that they have come back negative.

I guess I should look at the positive. The food allergy scratch tests (which I heard weren't even that definitive) will be over on Monday. I will then either cut out what I test allergic to, or if there isn't anything then I am going gluten free for a month.

Either way, by the end of the year I should know a little more about if/what bothers me.

By the way, how long would I notice changes with gluten-free? A month would be enough, right? I have GI pain for 10 years, and the other symptoms have started creeping up in the last few years. The only thing I don't have is the weight loss, which I know is big, but I believe my hormones are out of whack enough that it may negate that.

Finally, did celiac, gluten mess up anyone's thyroid? I don't have traditional hypo or hyper but my doc said my T3 and T4 were messed up. My husband said this happens when your body goes into starvation mode. I'm not starving for sure, but I thought maybe this could be due to malabsorption. Any ideas?

Thanks again for all of the help!!

Mandy

One other thing... please don't quote me on the purpose of the T3/T4. My hubby just told me he thinks that is what it is, but I haven't found anything definitive yet. Anyone know??