Does It Ever Go Away?

[Munzie]

I'm new to this and am wondering, does Celiac ever go away? I've had Fibromyalgia for 17 years now and was on countless meds, which I have all quit beacause none of them help and I was tired of subjecting my body to chemicals. Now I have this! The problems with my stomach started years ago already, but doctors only told me it was IBS. From searching and talking to others with IBS, I know now that I have a Gluten intolerance (since I've watched my diet, the symptoms have gotten better) and the stomach cramps have gotten worse and worse. I feel really stupid when these cramps set on, cause I feel like I'm no good to anyone -most of all my partner- kind of like getting on their nerves (?).  The symptoms started years ago, with a feeling like my intestines were actually knotting and I coldn't move, until they did sort of a 'plop'......I could actually feel this.....and then it felt like a charly horse in my gut. Then came the diahrrea and then a couple of years ago the cramps which now -if I eat Gluten- get so bad, that I feel I'm going to die of pain, which can last up to three hours.

 

Staying away from Gluten does help, but I'm always scared that I accidentally subject myself to hidden Gluten. SO........does anyone know, if this illness ever goes away, or am I stuck for life, will it eventually kill me? I know I probably sound hysterical, but believe me, I don't wish these pains on my worst enemy!!!!  Oh yeah, a couple of years ago my daughter -who was visiting me- called 911 cause it scared her so bad to see me all huddled up, crying and moaning in pain. They gave me a massive pain cocktail in the ambulance which didn't help the pain really, rather made me panic and had me feeling like I was in a lighted tunnel slipping away.....sooooo scary. I woke up in the hospital with my daughter crying at my bed, cause she was so afraid. The docs had found NOTHING!

 

I keep reading what the symptoms are, but nowhere does it describe these massive pains I have.  Anyone?  Please don't suggest going to a doc :-(    For one I don't have medical, and my income is very, very limited. Besides, I've lost all faith in most practioners, all just prescribing meds which never work.......in my eyes a waste of money.

 

Can a few of you maybe please deiscribe the symptoms you have? Thanks so much for letting me vent to you, Dani

[Renegade]

If you are celiac and not just intolerant, its for life and yes it will kill you. Symtoms are, abdominal pain, constipation, cramps, nausea, fatigue, brain fog.

[love2travel]

It can do serious damage if left untreated. There are said to be 200-300 symptoms which vary highly from individual to individual. Some may have neurological symptoms, some gastro. I had no outward symptoms whatsoever except, sadly, miscarriages (though I did not connect the dots then). My diagnosis was latent or silent celiac. I have accidentally ingested gluten a few times since my diagnosis a few years ago and did not react until this past winter when I became very ill very quickly.

The good news is you CAN heal being on a strict gluten-free diet for life. That is the only way.

Are you planning to get tested for celiac? Remember it is hereditary, too. Fibro can be a symptom of celiac. So far mine has not become any better but am still hopeful.

[laura1959]

I am new to celiac, but learned a lot about it through Googling things like "celiac symptoms" and so forth.  This site has a lot of good information if you go to the home page at www.celiac.com and start reading some of the links.  

 

My understanding is that there is no perfect cure but that you can have healing that will last as long as you do not eat gluten containing foods again.  I think that hidden gluten, or cross-contamination, is a common fear and there is a lot written on that as well.  You will have to make changes in how you prepare your food and work to get all sources of gluten out of your kitchen.  Also, you will need to learn how to read labels on foods and how to determine ingredients that mean "gluten."  

 

Check out some of the links on this site and other sites dedicated to gluten-free diets and celiac disease.  Hopefully you can get a lot of your questions answered that way.  

[cahill]

I'm new to this and am wondering, does Celiac ever go away?

 

........does anyone know, if this illness ever goes away, or am I stuck for life, will it eventually kill me?

Nope it does not go away

Yes you are stuck for life if you are celiac,, your gut may heal but  there is no cure for celiacs

Yes celiacs can kill you

[Pegleg84]

Welcome to the forum, Wulfin,

sorry to hear you've gone through so much pain to get to this point. Celiac is a hereditary auto-immune disease, and there is no cure. If you have it, you're stuck with it for life. There's some debate over non-Celiac Gluten Intolerance, but that also looks to be a life-long thing.

Everyone has different symptoms with this disease, and especially until recently, it's often misdiagnosed as IBS or some other problem. It is possible that you developed fibromyalgea because of the Celiac, and not the other way around. I have an aunt who didn't find out she had Celiac disease until after being diagnosed with thyroid cancer that was likely caused by the Celiac.

 

The good news, however, is that the pain can go away if you stick to a strict gluten-free diet. It might also help reduce your fibro symptoms, etc. It will take a while - a few months, likely- before you are feeling "normal" again, but if you're already noticing some improvement, then that probably means you're on the right track.

As for hidden gluten and cross-contamination, it can be difficult at first, but it gets easier as you figure out what's safe for you. Eating whole foods - vegetables and fruit, fresh meat, non-gluten grains if you can handle them- is the best for healing. Stay away from processed gluten-free stuff for a while, since all the new flours and etc can be hard on your system at first. It's also recommended to go off dairy for a while until things have healed up. They say it takes at least 6 months to heal up.

 

As for testing, if you can afford to get blood and biopsy tests done, do them now (you have to be eating gluten for them to be accurate). If you can't do it, then sticking to 100% gluten free and seeing if you get better might be all the proof you need.

 

So, yes Celiac is here to stay, but yes, you can get better! we're all here to help.

 

Good luck and happy healing!

[Gemini]

I have to clarify some misinformation here.......Celiac Disease can kill some people if you have a severe enough case of it and do not discover you have it or do not follow the gluten free diet, once diagnosed.  Not everyone gets to the point where they have enough damage to end up with severe malnutrition.  Not everyone ends up with cancer from it...that is more rare than the norm. It will not eventually kill you if you follow the diet and exercise and strive to live a healthy lifestyle as best you can.  It may not eventually kill you even if you do not follow the diet carefully but why set yourself up for other related conditions and feeling crappy the rest of your life?  The bigger threat than anything else is poor quality of life and you don't want that, do you?

[GottaSki]

I firmly believe un-diagnosed Celiac Disease caused all of the symptoms I was told are Fibromyalgia.  Celiac Disease destroys the ability to properly absorb nutrients, our bodies make do with what they can until different systems eventually fail.  I have lived thru the excruciating "Fibro" pain you describe as has my daughter.  I could never tolerate any medications prescribed over the years.  When I was diagnosed with Celiac Disease -- I was happy -- finally I could improve simply by removing gluten (not that it is simple at first) -- all of my gastro symptoms improved over the first months, but my muscle/joint pain, energy level and brain fog all got worse.  I had to remove many other foods that were preventing my digestive system from healing -- had some periods of improved health along with some huge setbacks.

 

I can tell you without a doubt it can get better -- how long it will take is the question no one can answer.  I agree with those that have suggested you have a full Celiac Antibody Panel -- if you don't want to go to the doctor there are private labs that can run the panel ($200-500).

 

Celiac Disease does not kill -- UNtreated Celiac Disease can.  The only treatment for Celiac Disease is the removal of gluten from the diet.

 

If you decide not to have any testing - remove ALL sources of gluten - I generally tell folks for six months -- I hope you are feeling much better in that time, but since you mention 17 years of Fibromyalgia -- my guess is it may take you quite awhile to repair the damage done to your system.

[IrishHeart]

In addition to the advice offered by Gemini and Gotta Ski, may I also add that my "fibromyalgia", and dozens of other symptoms, deficiencies and AI conditions were all celiac-related and in the nearly 3 years since my diagnosis, almost all of those symptoms that made my life a living hell are vanishing or resolving. I lived in excruciating pain --for a very long time---and was told to get a scooter and accept my fate.

 

Total hogwash. I knew it was something else. I took a long time to heal, but I am now back at the gym rebuilding my muscles and at one point, I could barely walk, sit, lie down or stand without horrid pain.

 

Granted, I had to work hard with a physical therapist, massage therapist and exercise a TON of patience the last 2.5 years, but healing happens and YOU CAN REGAIN YOUR LIFE.

 

Do not despair.!

 

Get a celiac panel done, if you can.

Yes, it is an autoimmune disease and if left untreated, you could die from it,

(I was headed for death, to be sure)  but  there is a treatment---the G F diet---and your damaged villi will heal and  you can live a much healthier life.

 

I,  personally, do not believe in the "fibromylagia syndrome" anymore than I believe in the "Irritable Bowel Syndrome" --they are just a part of the complex picture of celiac and gluten intolerance. IMHO

I am living proof you can get out of this pain. Good luck.

[1desperateladysaved]

All diet sacrifices have made it worth it for me.  I feel better.  I hope all of the same for you.  Hopefully, you are finally to the root of the problem.  The damage is reversible to a high degree.  I had symptoms for 30 years and am 18 months gluten free.  Learn and go down the gluten free road.  It is worth it.

[Munzie]

Oh....my.....gosh....THANK YOU soooooo much for all your heartwarming responses!!!!!!   It's good to know there is a place I can can come to and at least talk to people who understand me.

 

I am checking everything, prepare my gluten-free food first (this morning I made some toast and even used differnet utensils....it's so so scary!) Then tonight I made a mushroom stew and was going to thicken the gravy with corn starch; luckily I read the label firt and there it was: "may contain wheat"!!!!!!!   I almost threw out the unopened package. But I think I will just return it..so there lol.   Luckily I had bought some Xantham Gum (for baking) at the health food store -expensive $9.00 for 6oz!!!!!!      BUT.....I only needed 1/2 teaspoon and in good faith sprinkled it directly in the boiling stew; it disolves marvelously and the gravy was perfect.   I forgot to mention above, that I also take Probiotics and peppermint to soothe my tummy and bowels and it helps.

 

Thanks again to all of you :-) .   I won't be able to check any posts until next monday, cause I work as a live in caretaker and have no internet there. You all have a great weekend and I'll see you next week

[Munzie]

....I forgot something:    I have no constipation, rather diahrrea and am not losing weight. Does this mean something different?

[w8in4dave]

NO some lose weight some will gain weight. My daughters Mom in law was a stick person (really she was) she found out she had celiac , (she was in a bad state)! But after going Gluten free she started gaining weight. I haven't seen her in a while but I have a feeling she is bigger now. 

I am heavy, I am 5'7" and weighed almost 200 lbs. for the last month (Eating gluten free) I have lost almost 25 lbs. So it does affect people differently... Some get constipation , some don't.... 

 

I had severe cramping, diarrhea , pain in my gut all the time!! All the time!! No energy!! At all!! Things start to look a lil brighter once your gluten free. But just give it a chance! let it work it's magic!  

[eers03]

Celiac disease never goes away.  Your body can heal over time from the effects of the disease.  You will never be able to safely eat anything with gluten.  However, over the course of time you may be surprised by how well your body responds.

 

To me, its actually a blessing that you figured this out.  It's probably the root cause of the fibromyalgic symptoms you are experiencing.

[AlwaysLearning]

I had hoped my "IBS" would go away when I went gluten free but it didn't. My abdominal pain would come and go and feel as if I had bad gas and at times would have really bad cramping. It was so bad recently that I was really close to going to the ER.

Finally, after years of searching for answers, I think it may not be IBS at all, but simply a B12 deficiency. My gastroenterologist who tested for and found the B12 deficiency didn't mention the correlation, and if you just look up symptoms of B12 deficiencies, abdominal pain isn't mentioned. But, if you look up B12 deficiencies and abdominal pain together, you'll get the information.

I already had the supplements on hand when I found this information online and within minutes of taking the supplement, could literally feel it hitting my blood stream. A few minutes later, my intestines actually had a few waves of good sensations and the severe pain that had me stressed out for weeks disappeared completely!!!!! 

I am using Country Life's gluten-free B12 supplement and letting it dissolve under my tongue for a bit before swallowing, as directed. And I'm taking it with orange juice. But the positive effects don't last long, about 24 hours before the pain starts to return so I'm considering going back to the gastroenterologist to get a B12 shot or a prescription for the nasal spray to help get me back on track, at least to start. I do know that I'm not going to get the B12 patches because they are synthetic B12. 

And I'm taking the other deficiencies that were discovered more seriously and am considering getting a wider panel done. I read that an influx of B12 helps, but only in conjunction with other vitamins. If you do turn up with a B12 def., I say do a ton of research on your own rather than just rely on a shot alone or a sentence or two of advice from a doctor. It appears that it has a pretty complex symbiosis with other nutrients such as iron, folic acid, and vitamin D to mention a few.

Not sure if this will help you, but perhaps someone else can benefit because gluten allergies and malabsorption deficiencies go hand in hand.

I'm just crossing my fingers that I've finally found the source of my problem so that I can start fixing it, but I'm by no means certain that B12 is the only culprit.

[tka]

Dani,

I'm new to this too, but I know you can't do this halfway. My symptoms have been: alternating diahrrea and constipation, unbelievable gas, sharp stomach pains, headaches, mental fog, fatigue, immune difficiencies, aches and pains all over, particularly my hips, legs, and lower back, and depression (mostly because of all of the above). When I first went on the gluten-free diet, I noticed an improvement almost immediately, but now I'm going through what seems to be a period of setback (symptoms are worse when you ado get glutened once you actually go on the diet), so there are periods of ups and downs. When I first started the diet, I wanted tried to replace every old gluten favorite from before. I spent the first two weeks trying to replace waffles, pancakes, muffins, cookies, pizza, pasta, even donuts, with gluten free varieties. I put on 10 pounds! After realizing what I was doing, I made peace with those things and don't have to have those things all the time. I'm not saying I don't crave those things at times, but they don't consume me anymore. It will get better.

At the present time, I am still trying to figure out just where my boundaries are. I love oats, but after two tries, know I am going to have to stay away from them. I bought a new toaster for myself, new condiments, new ceramic pan, new makeup, hand, and dish soap, and know of a couple of places I can eat out safely. I'm learning a little at a time. Over the last 2 months, I have been glutened 4 times. Not good, but I learn from it each time. I hope you start to feel better soon.

Tammy

[IrishHeart]

Tammy

You may get the oats back after a while.(make sure they are certified gluten-free) 

Wait a few months and try a small amount. Some research suggests celiacs wait a year or even 2 before eating them..

I did not find them to be a problem after a few months ( about 6, I think) post-DX

Best wishes!