kpryan

I hear you... I definitely hate the bloating most of all.

I too had looked into fructose mal....it was so frustrating though b/c that cuts out a lot!

I was even thinking that my abdominals were just really out of whack after having 2 kids so I really amped up my ab workouts...but the bloating is just not normal.

I've been gluten free for three weeks now and intitially my bloating got much better, but just this last week it's gotten bad again. I think it may be fructose malabsorption. I did without fruits and fructose-heavy foods yesterday and my stomach's already gone down considerably. I'm going to try it again today and see what happens. But it might be something you can experiment with. In all honesty, I hate the bloating above every other symptom.

I did intense exercise for five months straight and busted my butt, only to still have that pregnant look with my stomach. That's when I started researching and came across Celiac Disease. Until I figure all of this out, I'm just done with the workouts.

I had been on a strict gluten-free diet prior to the challenge for a good year. And initially I felt completely better. I later gave up dairy b/c some of my symptoms had returned and then felt better again. But most recently saw this doctor mainly bc of bloating.

When I first started the challenge, I had the same usual symptoms (though the intestinal ones were less than I had expected). After starting Nexium though, I really didn't have many intestinal issues besides constipation and bloating. I did have other symptoms (such as fatigue, brain fog, irritability...)....

So now I'm back on gluten-free diet with Nexium (for now at least) and see how I feel on that.

Do give the diet a good strict try. Acid reflux and heartburn are not uncommon with celiac. Hopefully the doctor took lots of biopsies but your body will give you the best answer. How did your body react to the one month challenge? If you had symptoms come back that is also pretty diagnostic.

So I had my endoscopy yesterday after a 1 month gluten challenge. I know that many argue that 1 month is not long enough (I was gluten free for about 1 year to 18 months).

The biopies won't come back for 1 week. He also took biopsies for H pylori. The immediate endoscopy results were:

- Z-line irregular

- Small hiatal hernia present

- Gastritis (localized mild inflammation was found in the gastric antrum)

My doc thinks that I most likely just have reflux since the Nexium seemed to have resolved my bathroom issues. Although my chief complaint of bad abdominal bloating remains.

I guess we'll see when the biopsies come back, but I have a feeling that they'll be negative. Blood work has yet to come back either.

Yesterday was the first day in a month I didn't eat gluten, and my husband already said that i looked better ( less bloating...)

I asked if reflux caused bloating and he said not usually...and since I dont' really have heartburn...I'm still confused...

Not that i am wishing a disease on myself, but i just want a concrete answer...which i may have to realize i may not get.

So I'm going back off gluten now to see if that helps... but still had excessive bloating before when I was gluten-free..so hopefully some answer will pop up in the biopsies.

So I had my endoscopy yesterday after a 1 month gluten challenge. I know that many argue that 1 month is not long enough (I was gluten free for about 1 year to 18 months).

The biopies won't come back for 1 week. He also took biopsies for H pylori. The immediate endoscopy results were:

- Z-line irregular

- Small hiatal hernia present

- Gastritis (localized mild inflammation was found in the gastric antrum)

My doc thinks that I most likely just have reflux since the Nexium seemed to have resolved my bathroom issues. Although my chief complaint of bad abdominal bloating remains.

I guess we'll see when the biopsies come back, but I have a feeling that they'll be negative. Blood work has yet to come back either.

Yesterday was the first day in a month I didn't eat gluten, and my husband already said that i looked better ( less bloating...)

I asked if reflux caused bloating and he said not usually...and since I dont' really have heartburn...I'm still confused...

Not that i am wishing a disease on myself, but i just want a concrete answer...which i may have to realize i may not get.

So I'm going back off gluten now to see if that helps...

Did you go to a gastro for yourself? If so, you could prob bring your child to them...that's what my gastro said. It sounds like you like your doc so I would go that route or ask them for a recommendation for your child. The fact that their doc seems reluctant would make me want a 2nd opinion esp with such a family history.

Good luck!! I am getting tested (and went through a gluten challenge) mainly for my kids. I know I do better without gluten but I want to know if I have Celiac so my girls could be screened too....good luck!!!

I just realized today that i do get this too!!

I've been on a gluten challenge for 1 month and all month I've been feeling irregularly hot and my face gets very flushed.

I just finished eating my last gluten meal (I have my endoscopy tomorrow) and my face is hot...like I have a fever... Strange!!

I haven't seen anyone else mention this, has anyone else had the sensation of having hot skin, particularly upper body and arms, when glutened?

I don't get the rash.

Thanks

That definitely sounds like it could be gluten related. I would firstly see a diff gastro...one that believes you and your symptoms.

Have you had celiac testing? How about a biopsy?

Your symptoms definitely sound like celiac/gluten intolerance.....

I will let you know how my test goes!

Personally I would still see a doctor. When I saw mine he wanted to do an endoscopy anyhow to check for anything else. It was my decision to add in the gluten for a month (which I don't know if I was even worth it)....

But if you can see the right kind of open minded doc, I would see one that can understand where you're coming from and rule out anything else.

Also, my doc put me on Nexium and I have to say that my intestinal symptoms since I've been back on gluten and on the Nexium have been much reduced... So the month wasn't as horrible as I expected. Though I don't know that I could do 1-2 more months. Plus I don't think it'd be fair to my husband LOL

I wouldn't worry too much over what the doctor will think. Many are starting to coming around. I would simply tell him/her that you did your own gluten challenge and found that you absolutely cannot tolerate gluten and do not want to put your body through another challenge again just for an endoscopy. I did it and boy it just about killed me. I could only do it for a little over 2 months(my doc wanted 3). My husband is self diagnosed (his brother is celiac) mostly because he would just rather do the diet then go through all that I did for diagnoses and just feel better. With your family, I would just say that you tested positive to gluten intolerance. Your reaction to eating gluten is a valid test in my opinion.

I agree...and your symptoms are EXACTLY mine...every last one.

I'm getting my endoscopy next week...

No, you can't make yourself gluten intolerant. If you stop eating gluten you may have more pronounced symptoms when you eat it again, but the problem was there all the time; it just wasn't obvious to you.

Wow! Awesome info! i will read up on all that!

i am going for blood work monday for Tissue Transglutaminase and Endonsyial AB ( I think thats what the scripts says)....

For me, I can't do the 2-3 month challenge. i know I don't react well to gluten so i'll be off it come monday anyhow. And he wanted to do an endoscopy anyway to check for other things....

I know 2-3 months sounds rough. That is why I've never gone back and challenged.

You got me curious. I'm linking abstracts for you, as they're publicly available but I checked full text for two of the papers as the challenge time length wasn't in the abstract.

Here is an article showing median time to relapse in children with gluten challenge with a low amount of gluten is 13 weeks.

Open Original Shared Link

This paper used three months with a standardized amount of gluten to challenge, mentioned in the text.

Open Original Shared Link

I checked this paper, and people on gluten challenge had eaten gluten from 1.5-4 months, with an average of three months eating about 3 slices of bread a day.

Open Original Shared Link

So, researchers are not challenging for only a month. It looks to me like three months is a more typical time to get a relapse. It's a shame your doctor has not gone to the trouble to read the literature make a better recommendation for you. You might ask your doctor about getting an anti-EMA or anti-deamidated gliadin peptide test run at this point. If either of those is positive you are almost certainly celiac.

Thanks for the info! That is great!

I did doubt when he said "a month should be enough time". He wanted to do an endoscopy anyhow and said it was up to me if I wanted to reintroduce gluten. At first I was very hesitant, but then decided to do it in the hopes of finally getting some answers.

I say I've been gluten-free for 2 years, but unfortunately i bet a good part of that time was hidden gluten. Really I would say for the past 6-8 months I've been very strict (my own cooking utensils, not eating out etc...)

when I first stated the challenge, I dind't think I'd make it a week. Now that I'm intestinally feeling better...maybe I could go longer.

So you think 2-3 months is the norm? That seems rough to consider.

Many GI drugs can help with the symptoms from eating gluten. If your stomach and duodenum are irritated from gluten, a proton pump inhibitor lowers the amount of acid and helps relieve the irritation. A lot of celiacs get diagnosed with IBS and prescribed antispasmodics too. I used bentyl for a long time and it did help. Immodium did too. Unfortunately, the helpful GI drugs mask the symptoms of celiac and then people don't get the right diagnosis.

Even if your biopsy is negative, I imagine the bloating, fatigue, brain fog, and all your other symptoms is enough to make you disinclined to keep eating gluten.

By the way, has your doctor seen people who were gluten-free for two years have a positive biopsy after only a month? That seems like a really short challenge for biopsy. I thought it was a month for bloodwork and 2-3 months for biopsy?

Hi there. I have been on a gluten challenge for almost a month now (after being gluten-free for about 2 years). I'm being biopsied on Tuesday.

When I first started the challenge I had all the usual symptoms (although on a surprisingly lesser scale). But then I started taking Nexium (which my gastro perscribed) and since taking it, my intestinal symptoms to gluten seem to have almost disappeared!!! With the big exceptions of severe bloating (looking 5 months pregnant), fatigue, irritability, brain fog, under-eye circles and just not looking "well".

So what gives?? Can Nexium help with symtpoms. I am more confused than ever and am at a loss to what the biopsy will show....

Thanks!

Yes you can definitely be gluten intolerant...have you gone gluten free yet before your tests? If so how long did you eat gluten again before the tests?

That can affect how accurate your results are as there are many differing opinions on how long and how much you should be eating gluten prior to being tested.

This guy has a great book that goes into gluten intolerance as well as celiac...and as a lot of info on testing for intolerances. Dr Steven Wangen...if you google him, you'll see his info.

I am willing to bet that I'll be in the same boat as you soon. I've been gluten free for about 2 years and went on a gluten challenge for 1 month to be tested and have a biopsy. I have it next week. I'm hoping for some sort of answer at least....

Good luck! Bottom line...if you feel better off gluten, then do it!

Ok. Here I am again.

Suffered through the biopsy yesterday. Dr. said I'm not celiac.

So...

I went through all of that because I had a high positive on

a saliva test for anti-gliadin autoantibodies.

I did all the bloodwork--all was negative.

But because I read here that there can be 20% chance i still could have it, I did the biopsy.

So, now I'm wondering, is it possible to be gluten intolerant and not celiac? or is the saliva test just that wrong? I mean, I guess I'm confused about if gluten gets past the small intestines fine and the villi are happy, is there really a good reason to come off the gluten?

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

I def find that apples and honey big time bother me...and they have very high levels of fructose. There's a lot of research in Australia about fructose intolerance...I actually have a cookbook from an Aussie nurse that is quite good.

It's so frustrating though....feels like you can't eat much of anything.

Get tested specifically for Vit D as well... hope you find an answer soon!

Welcome to the forum!

I would call your Dr. today and ask for these tests. The longer you are gluten free your tests can show false negative. To make it even better, they can show false negative anyway.

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies

There is also a deamidated gladin test.I think this is a newer test.

I would also get them to check your vitamin levels. Low vitamin levels can cause you to feel bad too.

Oh, and don't let them label you with IBS. From what I have been reading, IBS does't wake you at night.

Best wishes to you!

If I were you, I would see a different gastro.

I've been gluten free for about 2.5 years without a diagnosis. I had the return of bloating and the same symptoms you mention so I am just now going to a gastro who I really like. He's going to do an endoscopy and blood work after I've been back on gluten for 1 month. It's not been fun but I'm hoping to have some answers at the end of this.

But since you are at the beginning of your journey I would find a doc that you like and that will work with you. Rule out anything else (bloating can be a symptom of other issues...some serious) and then take it from there....

I posted a while ago after I had my blood tests done, which came back negative. I went to the gastroenterologist this morning and didn't get any real answers. She asked why my PCP had suggested me going gluten free, and why not trying something else. I said she thought maybe my stomach issues (diarrhea, bloating, pain) were from a food intolerance or allergy and suggested cutting out breads, wheat, etc. I also told her that I have family members with Celiac. She said, well your blood work, "which is very accurate" shows that you do not have Celiac so let's clear that up right now. So with that statement I didn't even want to get into it with her that I have heard there are false negatives, what about genetic indicators, etc.

I have now been gluten free for 4 weeks. I still have some diarrhea issues, but primarily after eating salads. The biggest change I have noticed is the reduction of bloating and my upper abdomen is no longer as sensitive to the touch. There were times where if my kids climbed on me it hurt. I don't have that anymore. I told the doctor this and she did say that if I think being gluten free is helping, stick with it but "its a really hard diet if you don't have to do it." Yes, I know. She also suggested a probiotic, which I I know some of you on here take as well. So I am happy to try that as well.

So what do I do now? I feel like if the bloating and stomach pain are much better, and bathroom issues are reduced, I should stick with the gluten free....but it is difficult. Is it worth it to try going back to gluten again, but try the probiotic to see if that matters? Or stick with my gut and knowing this is making a difference? It is so hard without a diagnosis...and do you find it is hard to stick to the diet? Did you have slipups that made you realize you are doing the right thing?

Thanks....

I have to say that since starting the Nexium, I don't have the painful internal gas anymore and no heartburn (although it was just mild before)....so that's an improvement!

The bloating is still bad but that i think that is due to the gluten. 11 more days! Then I'll have my endoscopy and go back gluten-free... Then depending on what he finds and how the bloating is, I'll re-evaluate the nexium. But aside from the bloating, the nexium seems to help.

Nexium caused that same kind of bloating for me. I took it for 6 months and totally regret it. My reflux is much worse now (3 months off Nexium) than before I ever started taking it; my GI said that Nexium has these side effects and that apparently it makes reflux worse for some people.

Interesting about the results you are getting from your gluten challenge. I am surprised. I'm new to figuring this all out myself, though. Keep us posted, I'm interested in your story.

Lisa

I recently just went back on gluten myself after 2.5 of being gluten free. And I am experiencing the same symptoms as your son! I expected much worse, but have the same poop characteristics LOL...

I am having an endoscopy in 2 weeks... But it is very confusing.... Good luck to you and your son!!!

Ok, it's been a few weeks since I posted here about my 2 year old with what SEEMED like some pretty convincing Celiac symptoms so I made an appointment for him with Celiac specialist whom he will be visiting on Monday. Finally! We waited 5 weeks and during that 5 weeks my husband and I decided we'd feed him gluten but were scared at first. Well, he didn't react with his usual symptoms of exposure of: unformed/mushy/foamy poop that smelled like mothballs burned his skin and was full of undigested food. Oh, and it was usually yellow and enormous in amount! He's also had black poop, gray poop and blood marbled poop. Sometimes it would float. Sometimes it would seem sandy and hard to wipe off. Oh and ONCE he had 3 strange blisters on his scrotum but I've not seen them since.

NOW he mostly has harder poop, in small balls and sometimes black or very dark. Once in awhile I will see a streak of blood but that could be from the constipation he seems to be having now. No gray or yellow/frothy poop. Every once in awhile it will float but rarely. He sometimes will get a rash from it. He now has emotional issues where he'd melt down unreasonably whereas before he would be rather cool about things, he cannot handle anymore. Other than that, it's nothing. What gives? The textbook stuff happened if it was an accident and now that I intentionally give it to him in large amounts those harsh symptoms seem to be gone! Gaah!

Anyway, Monday will be interesting...........what are we to expect that first visit? I am assuming a blood test but with only 5 weeks exposure and no previous exposure (except accidental) during his entire 2 years of life, will they really find anything?

Hi there! Had a few questions for all you experts! I'm a 34 year old female with 2 kids. While I've had stomach issues my whole life, they worsened after the birth of my first child and that's when I thought it might be celiac or an intolerance. I went gluten free on the advice of my allergist and felt immediately better. I was blood tested a few months later (after going on a gluten challenge for 2 weeks) and the IgA and IgA deficiency tests came back normal. Despite this I went back on gluten free and felt great.

In 2009, after the birth of my 2nd child, I started to have the same bloating, gas and diarrhea issues and connected it to dairy. I went dairy free and again felt good. In total, I've been gluten free for about 2.5 years. Though I am sure, like all people, there was a learning curve so I would think that I had been getting traces of gluten for a good part of that time.

However in the last few months, I've had severe bloating issues where my stomach extends so much that I look pregnant. I finally decided to go to a gastro (who I really liked). He wanted to do an endoscopy to check for other issues and said that if I wanted to I could eat gluten for a month and that way they could do a biopsy while they were there.

I was scared to eat gluten again but decided to do it bc I would like an answer and I would like to know for sure for my daughters.

So I started eating it again 2 weeks ago. I do admit that I thought I'd be sicker. My biggest complaint is the bloating....my stomach is extremely bloated and I even had to bring out an older bra bc the band size on my current one was too tight! Other than that, I have been tired and headachey (thought I've been getting less sleep bc of my youngest and the weather has been very rainy so that could account for the headaches). I have had various intestinal issues...but not at the frequency I had expected. One other interesting symptom I have had since eating gluten again is cystic acne...

I am also hoping that 1 month is long enough....but I don't think I can go much longer than that.

So i guess my question is that, has anyone done a gluten challenge and not been as sick as they expected??

And also, my gastro put me on Nexium and upon some reserach it looks like excess acid sometimes produces the same symptoms as celiac....has anyone heard of this?

Thanks so much for your help! I just hope to get an answer at the end of this...this bloating just cannot be normal.

That's a very def possibility too....

so lesson I guess is I can only make the food I eat....sigh.

I would also suspect the mayo. If it's the jar kind (as opposed to squeeze bottle) and used to make other non-gluten items (sandwiches, regular macaroni salad, etc.) it could be contaminated with crumbs.

Heat is just taxing on the body no matter what. So if you are not at 100%, I am sure it'll be more taxing. Like you said trying to keep cool and hydrate would be the best course of action.

I am dairy free as well. Can I ask what you commonly eat? I often get so sick of my stand-bys ....esp in terms of snacks. I also notice that I have adverse reactions to a lot of fruits & veggies (apples, pears, brocolli...) so I know I need to up my fruit and veggie intake, but a lot of them bother me as well...

I don't know...I think that heat is difficult for anyone. Do you work out? I know when I am in better shape (and exercising outdoors) I can better handle the heat.

Where do you live? Has it just gotten hot there? If so, your body may not have had time to adjust yet to the high temps. Here in NJ, it's been in the high 90's for a few weeks which is unseasonable...so it's been rough.

Not to say that it might not be related, but I think 95 in your house would be very hard for anyone....esp if you are not used to that kind of heat.

Great ideas...thanks!!!

For the future ask that your burger be grilled on some foil. Grills are gluten death traps because if they have ever used any sauce on the grill with gluten in it (or grilled meat marinated with gluten) the grates will have gluten and CC your burger. Also consider the tongs used to turn the meat and ask yours to be flipped with separate tongs OR place foil on top of your burger as well as under. I visited some family this summer and we grilled out when they asked why I wanted foil under my burger I reminded them of the time they made pizza on the grill. Then they understood and complied and were extremely careful to not let my burger touch the grates.

Yeah the burger was plain....must be CC...so frustrating...like even the grill could be contaminated which never occured to me....

And I guess I just have to be super diligent when we go away this weekend...

If you have had the salad before without a problem I would suspect CC or the burger. How was the burger cooked and were any seasonings or sauces (like soy sauce, Worcestershire sauce, etc) added? I hope you feel better soon! Getting glutened is no fun.

Ugh we were at my in-laws yesterday and they really make an effort to accomodate me.

I had a burger (plain) and some gluten-free macoroni salad that my mother-in-law made. She's made it before and it has Brown Rice pasta, mayo (Hellmans), onion, carrot, celery, egg, salt and pepper. I really think that is all the ingredients.

Well ever since eating it yesterday I've been sick like I was glutened.

I don't know what it was....I just texted my sister-in-law to double check the ingredients (I don't want to tell my mother in law yet b/c she goes through so much trouble to make it just for me you know?). Unless its just cross-contamination which just royally sucks b/c it seems like the longer i go without gluten, the worse my reactions are.

So frustrating...and the kicker was that I brought my own lunch, but figured it was safe...

We're going away this weekend and that makes me really worried....