Symptoms Other Than Gi

[Rachel--24]

Hi,

I'm familiar with the "classic" symptoms and experienced most of them before going gluten-free. Mostly bloating, gas, and constipation...not too much diahrreah though.

These GI symptoms have never been my worst symptoms and I really didn't notice GI problems at all for the for the first year and a half of my illness. I was reataining lots of fluid (especially in the face) and no weight loss was noticeable. I had a feeling though that if the fluid was gone there wouldn't be much left of me. This past year as I've been adjusting my diet it became obvious how much weight I've lost. I'm not carrying as much fluid so I look almost anorexic but I'm feeling better.

I'm curious as to what kinds of other symptoms Celiacs get besides GI.

My worst symptoms have been burning and tingling (especially in the face/eyes/mouth)

Fluid retention

Blurry dry eyes

Brain Fog/concentration problems

Joint and muscle pain (especially in the face/neck/hands)

Tightness in the neck and shoulders

Fatigue

Depression

Crying spells

Food/chemical sensitivity

Night sweats

These have all improved dramatically since going on Candida diet which is also gluten-free.

My depression had gotten very severe over the past 2 years but completely went away immediately after beginning the diet.

Does anybody have these type symptoms (I'm only seeing the GI symptoms mentioned)?

I guess I'll know in 3 weeks whether I'm Celiac or not but I'm a little impatient.

Thanks,

Rachel

[lovegrov]

Everything you've named is a possible symptom but not everybody has these. Everybody talks about the GI symptoms, but fatigue is the most common symptom. I had the joint and muscle pains, night sweats, fatigue, anemia, and brain fog. I also has cold sores around my mouth. But very little diarrhea.

richard

[KaitiUSA]

The candida diet may not make you completely gluten free. So make sure you are following the gluten free diet as well and not just relying on the candida diet to be gluten free.Gluten is in other things besides the basic breads and things like that. It can be hidden in many things including makeups/shampoos/soaps/lotions, etc.

There are over 200 symptoms with celiac. Nobody has to have the same symptoms. What you described can be associated with celiac. Fatigue is actually the most common symptom. You do not have to have weight loss or any specific symptoms. In fact, you don't have to have any symptoms at all to have it.

Some of my main symptoms not including the GI symptoms I had were anxiety,sleep problems, extreme sweating.

Celiac can cause problems in any part of the body.

[judy05]

some of my symptoms were abdominal pain, spots in front of my eyes, dry/itchy eyes, insomnia, acid reflux, anxiety, skin peeling on fingers, cramps/pain in right leg, vertigo, fear of leaving the house, sinus congestion, thyroid problems, some diarrhea and constipation, nausea (a lot). I'm doing a lot better but I am on medication for the acid reflux and insomnia. hope you start to feel better soon, it took me almost a year because I had been sick for a long time.

P.S. I forgot the brain fog and headaches/migraines

[frenchiemama]

Sleepiness, brain fog, night sweats, depression, headaches, dermatitis herpetiformis and just a general "unwell" feeling (I also get GI symptoms, but they aren't severe).

[Jnkmnky]

My son appeared mildly autistic. He seemed not to get the activity going on all around him. From birth till the the month after he turned three, he screamed, cried, didn't crawl, walk *until nearly 2yrs*, talk, didn't interact with anyone, had bloody noses daily...huge bloody noses, loose stools, and finally-the month he turned three, he went into full gastro distress. 24/7 blow-outs during the day, in his sleep, nothing could hold his bowels in. He lost weight before my eyes. He grabbed his legs in writhing agony and screamed.

Four days on a gluten free diet, he said his first sentence. He actually LOOKED at us and saw us and participated in what the family was doing. Currently, 4 years gluten free, he's my most social, enthusiastic child of the three I have. His teacher told me that everything she tells him, he responds as though she just told him she's taking him to Disneyland. The gluten free diet perfomed a miracle on my child.

[Rachel--24]

Thanks guys,

This helps to know that maybe there IS an identifiable reason for all my problems. My doctors have been completely useless and have told me there is nothing wrong...that its all in my head. I've lost 25 lbs. in the last year and at one point couldnt function at all. Since adjusting my diet so much has improved but still the docs wont believe it...calling it the "placebo effect". I've decided to not bother with them anymore. My friends and family give me plenty of support.

I'm glad I came back to this message board and learned of Enterolab...so now I'll get some answers.

Katie, I'm sure I've had some gluten while on the Candida diet...possibly by contamination or in spices. Other than that I'm pretty good...mainly eating organic meats and veggies. I'd never given my shampoos and such a second thought but always had a headache and burning eyes after showering. Now that I've checked all my stuff had wheat in it even my lotion...but my cosmetics seem ok (I called the companies).

Thanks for making me aware of that problem!

-Rachel

[Debbie-nibbles]

These are the same symtoms I have and it makes me nuts. I'm so angry and annoyed sometimes my husband thinks I'm just shutting down. I did start a gluten free diet 2 months ago but went and had a french dip last Saturday and now here we go again. I have plenty of the belching (sorry) and bloated stomach, can't sleep, congested, blurred vision, tightness in back, shoulders, neck. Feel nauseated almost all day having to force food down. Feels like things crawling around inside of me, nerves? Can't concentrate, very anxious. I have also had a lot of stress lately too which doesn't help. Just keep going tomorrow will feel better.

[Rachel--24]

Debbie,

That sounds just like me. I get all those symptoms and I wake up several times in the night sweaty, with my hands or arms numb and it feels like somethings crawling under my skin. This doesnt happen too much anymore since I changed my diet but when it does I cant really figure out why. Hopefully changing my lotion and hair products will make a difference? I had this reaction last week after eating Bob's Red Mill Buckweat flour (I'm finally feeling better). Is it possible the stuff could've been contaminated? I'm scared to use it again. I dont know what happened..its suppossed to be safe for Candida and celiac disease. Anyone know about this product?

-Rachel

[Debbie-nibbles]

Debbie,

That sounds just like me.  I get all those symptoms and I wake up several times in the night sweaty, with my hands or arms numb and it feels like somethings crawling under my skin. This doesnt happen too much anymore since I changed my diet but when it does I cant really figure out why. Hopefully changing my lotion and hair products will make a difference? I had this reaction last week after eating Bob's Red Mill Buckweat flour (I'm finally feeling better). Is it possible the stuff could've been contaminated?  I'm scared to use it again. I dont know what happened..its suppossed to be safe for Candida and celiac disease. Anyone know about this product?

-Rachel

<{POST_SNAPBACK}>

Did the buckwheat say gluten free? He (Bob's Red Mill) also makes gluten products, I grabbed a cornbread mix and it has flour in it. Can't use that...

Yes I also have the night sweats but they have slowed down since watching my diet. Thought I was going into menopause. Today I do feel better then yesterday, how stupid of me to even try to eat gluten. We will get through this though! It's great having someone to talk to that does't roll the eyes or think this is just a diet get over it.

Yeah right

[Debbie-nibbles]

Did the buckwheat say gluten free? He (Bob's Red Mill) also makes gluten  products, I grabbed a cornbread mix and it has flour in it. Can't use that...

Yes I also have the night sweats but they have slowed down since watching my diet. Thought I was going into menopause.  Today I do feel better then yesterday, how stupid of me to even try to eat gluten. We will get through this though! It's great having someone to talk to that does't roll the eyes or think this is just a diet get over it.

Yeah right

<{POST_SNAPBACK}>

Even licking envelopes, stamps have gluten

[Rachel--24]

Hmmm...thats a good question! I always thought all Bob's Red Mill stuff was gluten-free. I emptied the flour into a tupperware and threw away the package.

Everytime I paid my bills by the time I was done I would be crying, depressed and extremely tired. I eventually figured out it was from licking the envelopes. I dont do that anymore and I'm fine now. I just never figured it was from celiac disease because my blood test was neg. If I eat something that gives me a reaction I immediately start to lose weight even if I increase my food intake. I start to look unhealthy very quickly and it takes 2 or 3 weeks to start looking better again. Do you ever experience this?

-Rachel

[Guest nini]

I can't use any Bob's Red Mill products. The gluten-free products are produced in a separate area of the SAME facility that produces gluten containing products. I don't think that it is an exclusively gluten-free environment and even though they do batch testing by the ELISA standard, I still react to it.

[Rachel--24]

Thanks Nini,

I guess if I do have celiac disease I must be highly sensitive because I REALLY react when I'm exposed to gluten. Everything else has pretty much been ruled out & I dont have food allergies or delayed-onset sensitivities. Small things like licking an envelope can really mess me up for days. I just thought about the fact that now I use the kitchen sponge to wet the envelopes...can this get me sick too? There are things that are still causing reactions which I havent been able to figure out.

-Rachel

[Debbie-nibbles]

Thanks Nini,

I guess if I do have celiac disease I must be highly sensitive because I REALLY react when I'm exposed to gluten.  Everything else has pretty much been ruled out & I dont have food allergies or delayed-onset sensitivities. Small things like licking an envelope can really mess me up for days. I just thought about the fact that now I use the kitchen sponge to wet the envelopes...can this get me sick too?  There are things that are still causing reactions which I havent been able to figure out.

-Rachel

<{POST_SNAPBACK}>

Hi again, now you said you use the kitchen sponge to wet envelopes? Then do you use it to wipe counters? Cross contamination is just the same. My husband and I have our own toasters, butter, squeeze bottle mayo, mustard, etc so knives aren't put in container after smearing on bread. Using the same spoon to mix something gluten then using it to stir something you have to eat? Some of us are that sensative. I'm going to my Dr's today because I really need to get after him on getting me some liquid vitamins and some kind of calcium pills. I notice that everytime I move my joints snap crackle pop.

[Rachel--24]

Debbie,

Yes, I wipe down the counters, wipe my utensils etc. with the same sponge. I never thought of the possibility and anyways didn't think I had celiac disease so it wasnt on my mind. I just figured I was chemically sensitive so thats why I react to the glue. Have you been dx with Celiac? I'm doing Enterolab so I wont know for 3 more weeks. I shouldnt have given up on Celiac since I have so many symptoms but my doctors really suck and when I asked them if it was ok to take the blood test if I was already gluten-free they said it didn't matter. I tested Negative and that was the end of it. They said I could eat gluten so I did and plenty of it because I was trying to gain weight but I kept LOSING instead. Then I got so sick I thought I was dying...I actually was saying goodbye to people cuz I didn't think I'd last much longer. Luckily I went gluten-free on the Candida diet and that pretty much saved me.

-Rachel

[judy05]

Thanks guys,

This helps to know that maybe there IS an identifiable reason for all my problems. My doctors have been completely useless and have told me there is nothing wrong...that its all in my head.  I've lost 25 lbs. in the last year and at one point couldnt function at all. Since adjusting my diet so much has improved but still the docs wont believe it...calling it the "placebo effect".  I've decided to not bother with them anymore. My friends and family give me plenty of support. 

I'm glad I came back to this message board and learned of Enterolab...so now I'll get some answers.

Katie,  I'm sure I've had some gluten while on the Candida diet...possibly by contamination or in spices. Other than that I'm pretty good...mainly eating organic meats and veggies.  I'd never given my shampoos and such a second thought but always had a headache and burning eyes after showering. Now that I've checked all my stuff had wheat in it even my lotion...but my cosmetics seem ok (I called the companies).

Rachel,

My GI doc called my response to gluten-free diet the "placebo effect" because my gene test was neg for Celiac, although my IGA was 75 and came down to 30 while on the gluten-free diet. This must be the "phrase of the day" in GI circles. I think my doc is schizophrenic because he told me to stay on the diet when I was sick and now I can eat gluten because I am well. He doesn't believe that I'm intolerant to dairy either.

Thanks for making me aware of that problem!

-Rachel

<{POST_SNAPBACK}>

[Katydid]

Hi again, now you said you use the kitchen sponge to wet envelopes? Then do you use it to wipe counters? Cross contamination is just the same. My husband and I have our own toasters, butter, squeeze bottle mayo, mustard, etc so knives aren't put in container after smearing on bread. Using the same spoon to mix something gluten then using it to stir something you have to eat? Some of us are that sensative. I'm going to my Dr's today because I really need to get after him on getting me some liquid vitamins and some kind of calcium pills. I notice that everytime I move my joints snap crackle pop.

<{POST_SNAPBACK}>

[Katydid]

Hi again, now you said you use the kitchen sponge to wet envelopes? Then do you use it to wipe counters? Cross contamination is just the same. My husband and I have our own toasters, butter, squeeze bottle mayo, mustard, etc so knives aren't put in container after smearing on bread. Using the same spoon to mix something gluten then using it to stir something you have to eat? Some of us are that sensative. I'm going to my Dr's today because I really need to get after him on getting me some liquid vitamins and some kind of calcium pills. I notice that everytime I move my joints snap crackle pop.

<{POST_SNAPBACK}>

[Katydid]

Hi Folks

Just wanted to throw this in the mix. My husband has been diagnosed celiac via biopsy for 18 years and he is extremely sensitive...so he know his body well.

On occasion, he has had celiac like symptoms when we were absolutely sure he hadn't ingested any gluten. Muscle aches in his calves, headaches, foggy brain, burning eyes, diahrea, bloating, etc.

We finally nailed it down after a lot of trial and error He has these symptoms after ingesting MSG or TBHQ. Now, we all know what MSG is...about 70% of our celiac support group cannot tollerate it, but this TBHQ is something different. It appears as an ingredient on a lot of labels and used in just about all restaurants in their cooking oil.

I'm not sure what it is or what its supposed to do, but one restaurant owner told us that using that cooking oil permittd them to cook foods at a higher temperature (faster) without burning.

I had one health food store owner check it out for me and she came back saying its 'nasty' stuff. My husband could have told her that, but anyway its definitely on our no-no list.

[Rachel--24]

TBHQ? Hmmm...never heard of that. Sounds like your husband does know whats going on with his body though. Good for him

Hopefully someday I'll know what the hecks going on with me. Don't know whether I have celiac disease or Candida or both but I seem to react to everything. As an experiment I decided to try a Pamelas gluten-free pecan cookie to see what would happen. I've been on strict Candida diet for past 3 months and this cookie would not be allowed.

I prayed I wouldn't react but I did

Now I don't know what to think. I think its highly likely I have Leaky Gut. Could leaky gut cause a Celiac to react to any foods regardless if they're gluten-free or not?

-Rachel

[nikki-uk]

Hi Rachel,my husband was dx with celiac disease 10 months ago.The last 10 months have been a game of 'detective work'!

With regards to your comment about leaky gut and reactions to gluten-free products,I would say that yes you can!

My hubbie annoyingly(I think) does not react to gluten,but he reacts to loads of other things with different symptoms and time scale(It can be so confusing!)

The further intolerances have developed after going gluten-free(Strangely enough)

If he has lactose,after about 2 hrs-stomach cramps and a headache that lasts for days,also fatigue.

Red meat seems to give him an immediate stomach cramps-so avoiding that for the time being.

Certain fruits seem to make him vomit within minutes

Anything with alot of sugar brings on headaches,lethargy but no cramps

The same applies to anything that is processed.

So,it's back to basics for everthing-cooking from scratch.

Of course there are days when he feels absolutely rubbish-but we can't identify the cause!!It's fun & games!

BTw my dh found a food diary can help you identify some of the more obvious problems.

It is a constant learning curve!Good luck

[Rachel--24]

Thanks Nikki,

I also notice more intolerances since going gluten-free. I'm not sure if they are new or just more obvious now that I'm not as sick. Since your husband went gluten-free has his intestines healed? Do you think he will always have these intolerances or will everything likely resolve once he heals from celiac disease damage?

-Rachel

[nikki-uk]

After 6 months of gluten-free my dh was feeling no better,in fact worse!

He had no appetite,terrible problems with swallowing,constant sore throat,feet and ankles swelling,achey,foggy head,nausea.He also developed some strange neurological symptoms(dizzyness.muscle weakness so bad he could barely move,clumsiness,balance problems-the list goes on and on!)

The gi doc done another small bowel biopsy and discovered that his intestines were not healing,a miniscule amount of improvement

The doc then put him on steriods to aid the healing and give him a better appetite.

It's been slow process but after a couple of months on prednisolone I can see some improvement.

However with improved appetite came the new intolerances(?)

In a funny way I think this is a good sign!

Many cder's gain lactose intolerance after going gluten-free.This is to do with the 'villi' healing.The tips of the villi involve lactose digestion,so I think that this is a sign he's started to heal.(I hope that makes sense!I am of course explaining it in very simplistic terms)

My hubbie will be seeing his gi again in Sept,so I expect he will want to do another scope/biopsy to see what's going on in there!

Now whether the new intolerances stay-who knows?!Some coeliacs find after a while they can slowly introduce milk,some never can without getting an extreme reaction.Lot's of patience needed !!

Regarding my dh's neurological symptoms-are they 'gluten ataxia'? or another autoimmune disease(polymyositis,myasthenia gravis or many others that fit the bill)

Another question mark.Dh has seen a neurologist and is waiting for appt's for a plethora of tests-(patience again!)

One thing is for sure-no two coeliacs seem to suffer the same symptoms.

[Rachel--24]

Sounds like he's had a rough time...hope the villi heal soon and that he'll feel better

Your explanation makes sense to me. I'm going on 3 years now with no "official" diagnosis. Just an unnoficial dx of Candidiasis. I can pretty much only tolerate organic meats and some veggies. I dont see how I'll ever gain weight eating like this.

-Rachel