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Rachel--24

Symptoms Other Than Gi

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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

<{POST_SNAPBACK}>

I have had the same symptoms! The facial swelling was really bad for a while. The water retention has also returned since adding sugar back in my diet. The doc said I did not have yeast anymore! The muscle/joint pain is worse when my ph levels become more acidic. I still get tingling and burning in my hands and feet which I was told was neuropathy, damaged nerves due to malabsorption of minerals. I felt good on the yeast diet also, but watch for malt sweetners and rice syrup. they contain gluten.

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Kathleen,

Did you have yeast as well as celiac disease? I noticed you listed TMJ in your signature...I also got TMJ about the same time my face started swelling. I couldnt open my mouth all the way and my teeth didn't quite fit right in my mouth. I wore a special niteguard every night for a year. Since the day I started the Candida/gluten-free diet I havent had to wear the niteguard and my jaw only bothers me if I react to something. Is this the same for you?

-Rachel

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Hi Rachel,

I am so glad that I found this board. Your symptoms are very similar to mine. The first symptom I noticed was water retention and a stuffy nose. For some reason I linked it to dairy, but not to gluten. Then I went on a low carb diet, which by default allowed no bread. All my symptoms went away. But I went off of it because I was extremely fatigued. Then I sort of tried limiting wheat and dairy but still eating it ocassionally. I think I continued to get worse during this time, becuase now I have lots of fluid retention, fatigue, insomnia, cramps, gas, bloating, chemical sensitivities, rosacea, and recently I have been noticing dry itchy eyes and joint pain. I also have TMJ! That is something I would have never linked to gluten. My doctor thinks I am a hypochondriac. He's tested me for tons of things but the only thing that came up positive was low iron. So he told me to take an iron supplement and sent me on my way. So that's why I am considering the enterolab tests. Anyway, good to know there are people out there having similar experiences!

Kallie

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Kallie,

Wow! Your're symptoms are exactly like mine and all of my tests have come back normal as well except for LOW IRON...which my doctors dismissed. I feel like I've had a million tests but no answers so of course my doctors think I'm a hypochondriac too. That why I'm doing Enterloab as well...just got my test kit yesterday :)

Did your docs ever test you for Celiac?

Thanks,

-Rachel

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Oh yeah,

I do take Flax oil as well as Aloe Vera juice and L-Glutamine. I think all 3 of these help me. :)

-Rachel

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Hi Rachel,

It is amazing how similar our symptoms are! I have had some weight loss as well, but I am still nowhere near anorexic-looking :) Nope, none of my doctors ever even mentioned celiac. They just gave me some drugs (like celebrex for my TMJ) and sent me on my way. Pretty pathetic, huh?

Kallie

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Kallie,

Yup...I had all your symptoms except the insomnia. I even was dx with Rosacea...I'm not sure I really have it though (never had any redness on my face).

The weight loss didn't really become a problem until about 8 months ago..it happened pretty quickly. The more I ate the more I lost. Since going gluten-free I'm not losing anymore but I'm stuck where I'm at :( I'm 25 lbs. lighter than I was in my pic and as you can see I wasnt big to start with :(

Yeah...doctors...I've pretty much given up on mine. They only want to treat the symptoms...never wanna take the time to find a cause. All of the tests they've done have been at my request...they never initiate anything. When I asked to be tested for celiac disease he was like "Oh yeah...I was gonna say that...you should get tested for Celiac." Yeah right...He never mentioned Celiac in the whole year I'd been seeing him! I definately can relate to your frusteration with the docs :)

-Rachel

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Rachel,

I did/do have yeast problems. I have tried every prescription/diet/herbal remedy. It seems better, but it is diffidult to produce the right flora when your intestinal lining is not healed. I have also noticed that anything producing acid will bother me and cause swelling, fatigue etc. This means most fruits, coffee, tea, too much sugar, beef- lower my ph level. I also get bad neck and back pain from this and also from gluten-free grains. I was recently told to avoid all sedementary foods until the lining has healed. They tend to scrape the lining too much. Acidic foods irritate as if you are pouring lemon juice on an open wound. When I avoid these, the pain goes away. I have had to add egg white protein powder to my diet to give my body fuel for healing. I had been eating under 900 calories /day for so long, I started retaining a lot of water, and was not healing.

I still wear my splint for tmj.

Kathleen ;)

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Kathleen,

I do have problems with acidic foods like lemons. I had my PH tested once and I was highly acidic. Maybe this is only a yeast problem I'm dealing with and not celiac disease?

Can celiac disease cause problems with acidic foods or sugar?

-Rachel

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Rachel,

Any irritation in your digestive tract can cause acid problems. If you do not digest properly, your body can not make the digestive enzymes and good bacteria. For me, I believe the celiac disease caused the yeast problems. If you have malabsorption, you do not absorb the minerals and nutrients needed to break down food. Food passses partially digested and ferments in the digestive tract, creating a good environment for yeast.

This also causes a more acidic environment. You can get ph test strips at most health food stores. It is good to monitor at least daily to determine if something your eating is causing problems. Acid was a symptom for me that also caused headaches and dizziness. The wheat caused the acid!

Kathleen

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Thanks,

I wanted to get some of those PH strips but thought I had to order them online so I hadnt bothered yet. I'm going to check the health store. :)

I think that will help me figure out what I'm reacting to as you mentioned.

I know for sure that I'm not absorbing well but its constantly changing from bad to a little better to bad again. I cant gain any weight at all and will even lose some on the bad days but then things will change...my skin and hair will look better and I'll gain a few lbs only to go back to bad again :(

Its very frusterating...but on the good days its apparant to me how fast the body can heal itself...just wish it would keep healing...obviously I'm doing something wrong.

-Rachel

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If you have leaky gut (typical with celiac), you most likely have other food allergies caused by it. So even by removing gluten, you will not feel 100% better. Some of the allergies will go away after a while because your body is healing. Some will stay with you.

Go online to google the "eight common allergens" to find likely culprits. YOu can also run a blood-allergy test for foods. Mine came back allergic to some 45 items. It was shocking. Helpful, but difficult.

For me, I felt remarkably better almost instantly going gluten-free. After several months, though, it seemed I got worse. Now it's been 18 mos. and I'm starting to feel better again. It was a real shocker to feel worse and discouraging too. That is when I investigated the allergies. I think at first my body just felt so great being gluten-free, but as time went on I realized I still didn't feel that great and could feel the ickyness of the allergies, which had gone unnoticed while I was eating gluten (because the symptoms from that were so much worse.)

Hth,

Merika

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Merika,

Thanks...that is helpful :)

I felt great the first month gluten-free but now I'm struggling again. Can't seem to get back to feeling good again. I think I do have leaky gut and I react to many foods. It changes with how I'm feeling though...the worse I feel the more foods I react to and when I'm feeling good I seem to react less. The same goes for chemicals. I'm just really confused as to what is causing this :(

I've had allergy tests and they all come back NO allergies! I'm going to test again but I'm not expecting much.

-Rachel

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Hi Rachel,

I was tested for allergies too and I got a positive for grass and mold amd parsley (yes) but the ones I was expecting (wheat and dairy) didn't show up. So I am assuming that any reactions I have to foods are caused by my intestines beng so damaged from the gluten.

Oh, one more sypmtpm I have that I forgot to mention--hair loss. Have you had that happen? I have lost about half fo the hairs on my head over the past two years. The doctors kept testing my thyroid and telling me it was fine, and it's probably "stress-related." And I had so much hair to begin with that it still looks okay, even though half of it's gone. Smaller hairs are growing in but they are baby fine, not nearly as thick as my old hair :(

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Kallie,

That is so funny you asked about hairloss. I was just gonna post to ask whether anyone else has this symptom! We are so alike with our symptoms! Actually the first symptoms to show up almost 3 years ago were hairloss and headaches. I do have thyroid disease (Graves) but it was always under control and not causing me problems. Hairloss would occur though if my thyroid got overactive. I assumed that was the problem but my meds weren't helping so I ended up having my thyroid ablated with radioactive iodine which also didn't help. My symptoms only got worse with time :(

At first the hairloss was bad but just like my other symptoms it gets better and worse. Most of it grew back but when I start feeling particularly sick it will get thin in the front again. I'm thinking it's due to vitamin/mineral deficiencies?? At the same time I'll get grooves in my nails, some peeling skin on my hands, fatigue, eye problems and all the other symptoms I mentioned previously.

My thyroid has tested normal for the past 2 years so thats not the problem...although for awhile I wondered whether or not I was absorbing the meds.

-Rachel

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Rachel, I think we are twins! My thyroid tested low once, so I went on meds, then I went to another doctor and it tested high so she took me off of it. I really think now that the hair loss is due to mineral deficiencies. I know that low iron is usually a cause and who knows how many other minerals we are deficient in that they never even test for? Oh, by the way, I went to a endocrinologist for my hair loss when it first started and he looked at me (I was slightly overweight at the time) and said "well, you are definitely not malnourished." Isn't that awul? I probably was very malnourished!

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OMG...I hope you didn't go back to that endo! When I was down to 94 lbs. and hardly functioning I was crying in my docs office telling him that I was scared cuz I was losing sooo much weight regardless of how much I was eating. He just shrugged and said "I'm not worried..your tests are normal so its not like you're going to die." Thats pretty much what I've had to deal with from all the doctors I've seen...and the sicker I've gotten the worse they've treated me. I hope I can get a definate dx soon for myself but also I wouldn't mind rubbing it in their faces just a little :)

-Rachel

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I want my sister to join this conversation. I just e-mailed her this page. She has been so sick for so long. She gained weight with chronic d. I lost weight, but thought it was due to stress. I spent my life savings on dental guards because I started breaking teeth (molars). I was sure I had a brain tumor - the headaches were that bad. Finally a diagnosis of TMJ. But the hair loss started years before that. I went to a doc & said - I'm going bald. He ran his fingers through my hair & said - oh yes you are. My hair lets loose too easily. He said I probably had a vitamin/mineral deficency & also rx'd rogaine. So I've alway eaten well, lots of whole grains, whole wheats etc.

I've posted else where & explained that I have been through medical hell. All my complaints, seem to be classic celiac. & in addition I most recently went through breast cancer treatment. Why did no one along the way consider diet? I did go back to all my old docs (new job - new insurance) & say - I think it is Celiac. But now I feel like I want to be on tv or in the paper. - it would have been so different, if someone had thought of this 20-45 years ago. How long have I been sick? It truly is hard to remember when I last felt well.

I do hope my blood work (post diet change) will confirm, celiac, then I don't have to wonder if it is simply a gluten intolerant. Because it would be nice to not have to be so obsessed with this, but I suspect Celiac disease is the culprit. I think it explains a life time of problems.

I think so because I feel that much better on the diet, and so does my sister. I want it all to clear up & go away. I'm terrified of poisening myself again.

I want my entire family to go gluten-free. I wonder if we all have it? So many bizzare & difficult symptoms. Anybody else share it with all their sibs &/or kids? The sister who is well again, called one day to say she had suddenly stopped clenching and grinding her teeth. I think mine is better too.

I also find the fatigue is lessoning, the brain fog is lifting, the pain is almost gone, the headaches are gone, the itching is improving, the vomiting is gone, the d/c is almost gone, the nerve flashes are gone, the freqent urination continues, the post nasal drip/ cough/ gross/ continues. The heartburn is gone, my irritation with people is lessening, the depression is lightening (though recent doubling of anti-depressants helped). I figured anxiety was part & parcel of all the prior pain & cancer. But maybe this entire journey can be explained by this self-diagnosis.

I continued to worry that it might be a plaseibo (how do you spell that?) effect. But when I glutened myself last weekend. I no longer had doubts. I can't have it. So Gluten-free Casein-free & soy free am I

bb22

how to do it & ever leave my house again????????

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p.s.

I also have funky fingernails. Ridges & spots & especially not so good post chemo. and all the other odd symptoms & allergies. injected Iodine. I love salt. I guess I should be iodine free. And all the bleeding episodes and the bruising and the bug bite allergies & the not wanting to eat anymore.

What about Hansen's natural soda. I'm confused about natural flavoring & flavoring some other kind, artifical? - one is ok? and one is not?

thanks

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Rachel

Good idea for this thread. It's one of the best threads I read in a while. learned a lot

D.

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Rachel

Good idea for this thread. It's one of the best threads I read in a while. learned a lot

D.

Wow...this was one of my first posts. Its kind of interesting to go back and reread....alot of things have improved since then but still have lingering problems. I've definately learned plenty about gluten since then though. :D

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I do hope my blood work (post diet change) will confirm, celiac, then I don't have to wonder if it is simply a gluten intolerant. Because it would be nice to not have to be so obsessed with this, but I suspect Celiac disease is the culprit. I think it explains a life time of problems.

I hope you get some answers for yourself. Did you take the bloodtest after starting the diet? If so, the results may not be accurate. My bloodtests were negative after 2 weeks off gluten.

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P.S.S.

Oh yeah the leg cramps too. Something awful. And indeed, post glutening that came back too. The symptoms are so long & so diverse - I guess I want to give them, the docs, some credit for not figuring it out - but alot of me is pissed off. On my behalf & on everyone in my family's behalf. Did you also have restless leg syndrome? I sure did, since I was 20. Not typical RLS, but then I'm not typical anything.

I've been walking into walls & catching desks with my hips forever. I just thought I was a puppy in a big dog's body. Where to stop & start with all the crazy reactions to everything. Feeling very overwhelmed.

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