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Maybe I'm Not Celiac After All...
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16 posts in this topic

I think it's been almost a month since I went gluten-free. I had a positive tissue transglutaminase antibody test, but a normal biopsy. So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet. I have been vigilant about avoiding gluten. However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal. He said that doesn't mean that I don't have it, since I did have the positive test before.

But besides those negative test results, I'm still sick as hell. I have severe diarrhea and abdominal pain & distention. I sleep all the time and feel dizzy. This diet is not working. So maybe the GI was right, and this is just garden-variety IBS. If that's the case, I can't do a thing about it and am considering suicide.

Any thoughts? :(

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I think it's been almost a month since I went gluten-free.  I had a positive tissue transglutaminase antibody test, but a normal biopsy.  So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet.  I have been vigilant about avoiding gluten.  However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal.  He said that doesn't mean that I don't have it, since I did have the positive test before. 

But besides those negative test results, I'm still sick as hell.  I have severe diarrhea and abdominal pain & distention.  I sleep all the time and feel dizzy.  This diet is not working.  So maybe the GI was right, and this is just garden-variety IBS.  If that's the case, I can't do a thing about it and am considering suicide. 

Any thoughts? :(

<{POST_SNAPBACK}>

It takes longer sometimes. I did not feel alot better for 3 months and was not normal for about 8 months.

I would believe the blood test...tTG is a very accurate test and biopsies can rule celiac in but not out because they can easily miss damage.

Have you changed lipsticks and other cosmetics, shampoos, soaps, lotions, etc?

Make sure all of that is gluten free. Also, since you are new to the diet it is easy to get hidden gluten in. I had many incidents at first where I thought the food was gluten free but it had it hidden.

Just don't expect results so fast..it takes time to heal.

Just stay gluten free and try to keep positive. Thinking of suicide is serious so maybe you need to talk with someone about that if you have seriously been considering that because that is not something to mess with either. Feel better soon :D

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I think it's been almost a month since I went gluten-free. I had a positive tissue transglutaminase antibody test, but a normal biopsy. So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet. I have been vigilant about avoiding gluten. However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal. He said that doesn't mean that I don't have it, since I did have the positive test before.

But besides those negative test results, I'm still sick as hell. I have severe diarrhea and abdominal pain & distention. I sleep all the time and feel dizzy. This diet is not working. So maybe the GI was right, and this is just garden-variety IBS. If that's the case, I can't do a thing about it and am considering suicide.

Any thoughts?

OK...

1) One month is not nearly enough to see results. Some people will feel better in one month, for some people it might take two, three, or four. But definitely do not give up after one.

2) While it may be that you just need more time on the diet to feel the effects, there are a number of other reasons why you might not be getting better: It could be that you are still ingesting gluten. Have you checked everything? All the food you eat, preparation (if you live with someone who eats gluten), make up (if you're female?), shampoo, toothpaste, etc. It could be that there's one more thing. I was gluten-free for one hellish year with no improvement--I actually got worse. My intestine had healed so they couldn't understand why I was still sick. Finally after a ton of testing, we discovered that I had another intestinal problem, malrotated intestines (which is rare--and occurs in infancy--I'm nearly 15 now). Surgery in February and I was fine. See? In my case I was gluten-free, but we have to remember that there are other possibilities besides celiac--just because you discovered a problem doesn't mean you discovered the only problem.

3) There is a 50/50 chance you have celiac in my opinion (me being only 15 and not a doctor, so don't take me TOO seriously). The tTG is a good test, but it can give false positives. However, if it is a true positive, it could just be that you have gluten intolerance that's not yet developed into celiac, so you don't have intestinal damage. You still need to follow a gluten-free diet if you have that. The tests should be normal or a little closer to normal if you've been following the diet and you have celiac...that is a sign that you're healing and following the diet, so that is not a bad thing at all.

4) Do not give up yet. I was REALLY sick for 14 full years and I wanted to die and just have it over. I would never have gone so far as to purposely do it, but I just wanted the pain to be gone... I hung in there and now I'm healthier than I've ever been before...I got through it. Don't give up. ;)

-celiac3270

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Hi, celiac3270,

I've read a lot of your posts and respect your opinion; it's hard to believe you're only 15!

Regarding your malrotated intestines, I had a doctor diagnose me with volvulus of the splenic large intestine once. He didn't suggest that there should be anything done about it, though. From what I understand from reading and from other doctors, that is a medical emergency that causes vomiting, fever, and acute symptoms. My symptoms are chronic and have occurred over many years. I'm quite confused about that subject. :blink:

You probably have suffered a lot over the years. In the last few months, I've lost my job, had a hysterectomy, and my husband left me. He couldn't stand my being sick anymore. I thought that I would get better on this diet, but I can't look for work now. I can barely tend to the children. I see no hope, but probably wouldn't really kill myself.

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Hi, celiac3270,

I've read a lot of your posts and respect your opinion; it's hard to believe you're only 15!

Regarding your malrotated intestines, I had a doctor diagnose me with volvulus of the splenic large intestine once.  He didn't suggest that there should be anything done about it, though.  From what I understand from reading and from other doctors, that is a medical emergency that causes vomiting, fever, and acute symptoms.  My symptoms are chronic and have occurred over many years.  I'm quite confused about that subject.  :blink:

You probably have suffered a lot over the years.  In the last few months, I've lost my job, had a hysterectomy, and my husband left me.  He couldn't stand my being sick anymore.  I thought that I would get better on this diet, but I can't look for work now.  I can barely tend to the children.  I see no hope, but probably wouldn't really kill myself.

<{POST_SNAPBACK}>

"Volvulus" is twisting of the intestine. I find it very odd that a doctor would diagnose someone with that and not do anything about it. (Malpractice) Did you have upper GI to diagnose that problem?? Very serious issue you are talking about if infact that is what you have...life threatening if not taken care of in time.

See attached website on malrotation and volvulus. http://www.chw.org/display/router.asp?DocID=2809

Do seek professional help for all your issues!!

Feel better!

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When it comes to celiac celiac3270 and Katie run circles around all the "real doctors" out there.

One month is not long enough. I felt better right away but that is a relative term. "Better" for me would still be really sick for anyone else. It was a good three months before I really felt like I was on the right track. It was a year before I really felt healthy for the first time in my life. Double check to see if you are not getting any hidden gluten. You shoudl look into the possibility if you have any other food intolerances like dairy or soy. Soy can be a problem for me in large quantities. I was sick for 36 years so don't give up. I was days away from losing my job and this ended my marriage but that was a good thing. My life has never been better but it was a struggle to get there but if I can do it anybody can.

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I know how you feel. When I first got sick I had to go on disability...then I lost my relationship...thought I might lose my house at one point. For awhile I was so sick and depressed that I prayed every night that I just wouldn't wake up...it was a really rough time. I've been on the diet almost as long as you have and I cant say that I'm anywhere near 100% yet. I know it takes some time. I agree with the others stay gluten-free..make sure you're not missing anything. I was getting reactions from a couple things that are suppossed to be gluten-free...don't know what the problem was but I'm avoiding those products now. You could be having trouble with something your eating other than gluten or you could still have gluten slipping in. Also like celiac3270 said...there could be something else going on as well as the gluten intolerance. Be patient..there will be better days. I'm in a MUCH better place than I was in April...I actually had a head start on the gluten-free diet because I was 95% gluten-free since April while on a candida diet...the last few weeks I'm 100% gluten-free (trying to be anyways). Hang in there...it'll get better. :)

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Not even 15, lol. My b-day is in late January.

Absolutely...this should have been taken extremely seriously. Here's a quote from the link in my signature for malrotation:

Malrotation and Volvulus

Symptoms of malrotation and volvulus may include vomiting, pain, a swollen abdomen, bloody or loose stools, rapid heart rate and breathing, little or no urine, and fever.

Malrotation occurs when the intestine or bowel does not fold or rotate properly in early fetal development.  Malrotated intestines may “flop” around since they are not properly attached to the abdomen wall.  This can result in the intestines twisting around one another.  This is called volvulus.  As this happens, the duodenum may be twisted shut which can induce vomiting with or without pain.  If the intestines twist further, they may compress the blood supply.  This can cause severe pain as the blood supply to the small intestine is cut off.  Sometimes, the twist relaxes and the pain resolves.  However, with each episode there is the chance that the blood vessel compression will last too long and the intestine will die.  Unfortunately, the entire small intestine is usually involved, with the exception of the top few inches and the lower half the colon.  When this much bowel is lost, most children require intravenous nutrition for the rest of their lives. 

Malrotation is diagnosed by having the child swallow barium.  It is important to track the barium as it travels through the first part of the small intestine to make sure the intestine passes correctly from right to left.  Sometimes barium enemas are used to see the location of the beginning of the colon.  Because malrotation can be a life-threatening emergency that most commonly occurs in childhood, pediatric radiologists are often more familiar with its subtle forms and more aggressive about watching barium long enough to make sure malrotation is not present.  For this reason, we recommend that studies done to evaluate vomiting in children be done by pediatric radiologists whenever possible. 

Malrotation is a medical emergency.  If volvulus is not present, i.e. the bowel is not blocked from twisting and the blood supply is not being compressed, surgical correction is usually done within a few days.  If vomiting is present and x-ray studies show that volvulus is present, surgical therapy should occur immediately.  The surgeon will untwist the bowel and try to determine if any bowel has died.  Once dead bowel is removed, the remaining intestine is attached to the back of the abdomen to prevent further volvulus.

Don't give up. Just think that if you're at the bottom, there's nowhere to go but up. It will get better--if he wouldn't stick by you in sickness, your ex-husband wasn't someone you would want in your life, anyway. You will get your health under control. When I was sick I thought about the future--like, if I keep getting sick like this for the rest of my life, how could I hold a job when I got older? Don't worry about that stuff right now--once your health is under control, you can get a job and everything will fall back into place.

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I'm sorry you aren't feeling better yet, but don't give up. Since your first test was positive and your recent ones weren't, I believe you do at the very least have a gluten intolerance. You may be having other food intolerance's as well. Dairy, Soy, Yeast and so on... I would stay away from any processed prepared gluten free foods, and stick to a very plain diet for a little while. Fresh Fruits and Veggies (stay with the milder ones at first like Bananas and Applesauce, Green Beans and Peas..) Fresh Meat seasoned only with salt and pepper and a small amount of olive oil and then baked. Plain rice (seasoned with S&P) or Plain Potatoes... Gradually add other whole foods in one at a time (several days in between each) and watch for any symptoms.

Hope that helps you. When you have been sick for a while, sometimes you have to keep it very simple at first. I had to do that because of 34 years of undiagnosed damage. I started to feel better fairly quickly after that. I still have trouble with a lot of the gluten free processed foods.

My daughter on the other hand, does just fine with the processed gluten-free foods, but I have to keep my diet very plain and simple.

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To echo nini-

Stay away from the processed foods at all cost. Only when I started that type of diet (SCD) did I get better. You could look into it at www.breakingtheviciouscycle.com. I have never felt this good...EVER

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right after i was diagnosed, i noticed i suddenly became more ill than before i was diagnosed. i was vomiting more and there was seemingly no explaination. i decided to look at my brand new diet, as i thought that maybe something new i was consuming was making me sick. it turns out i was right. i'm allergic to buckwheat. not only that, but i'm allergic to corn as well. though i'd never had a reaction to corn before, i also never consumed as much as i do now since it's such a major replacement grain for gluten free products. what my doctor told me was that with minor allergies, you can eat it and be fine up until a certain point before you get sick. basically, there's a threshhold you have to reach first.

anyway, try looking at some of the newer things you are consuming and get tested for allergies to them. also, like others have said- be patient. you're not going to get well overnight. if you are also having thoughts of suicide or are suffering from depression, it might be wise to see a counselor. celiac disease is a major lifestyle change, and you could use the support.

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Hang in there- it is REALLY hard and don't let anyone tell you otherwise. I've been gluten-free since February and at first, I noticed massive improvement and then I had a slide- a big one. I've felt hideous since July and I'm trying to figure out what it is- I think I've isolated some things I can't have like much dairy, no distilled products and probably no alcohol. I'm going to go way down low and eat very basic for awhile and see what happens.

It's like you think, "Ok, I'll go gluten free and everything will be fine." but that's not always the case. There maybe other problems and it takes on average 6 months to a year to heal.

The worst part, for me, anyway, is the feeling like you just can't take it anymore. It would really help if you could find a support group (if online with us isn't enough) or someone to talk to. Sometimes you just need someone to say "Everything's gonna be OK" and IT WILL. It just takes time. Hang in there, Beverly

PS Even if you don't have Celiac's, the gluten free diet is good for so many things!

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Hi there Kate. Boy, can life be really tough sometimes, and usually all the bad things seem to happen at once. I hope you will soon be over the worst and can enjoy life again.

Some of us were still reacting negatively to the gluten-free grains and have started a diet called the Specific Carbohydrate Diet. If interested you can check out the posts in SCD Support Group under Gluten-Free Diet & Weight Issues at this forum. I must say my digestive system has never felt so normal in a very looooooong time. I was still having a great deal of digestive discomfort from the gluten-free grains so this diet has been a life-saver for me. I noticed improvement very quickly.

Please search, and search again for answers/solutions. There is a reason for your symptoms and sometimes we have to function as a mini-detective :blink:

Be strong and take good care of yourself, Misa :)

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I was just wondering how you're doing. I know what you mean. It's not really that you want to die or anything, you just want the pain to stop. Whether or not you have celiac, you've got a lot of the same symptoms and the people here really understand what you're going through. Just knowing you're not the only one helps sometimes, ya know?

Hang in there...

Nancy

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I think it's been almost a month since I went gluten-free. I had a positive tissue transglutaminase antibody test, but a normal biopsy. So my GI sent me a letter saying he personally did not believe I have celiac disease, but that it wouldn't hurt to try the diet. I have been vigilant about avoiding gluten. However, my family doctor did a blood test last week and the tTG and IGA and other tests were all normal. He said that doesn't mean that I don't have it, since I did have the positive test before.

But besides those negative test results, I'm still sick as hell. I have severe diarrhea and abdominal pain & distention. I sleep all the time and feel dizzy. This diet is not working. So maybe the GI was right, and this is just garden-variety IBS. If that's the case, I can't do a thing about it and am considering suicide. Any thoughts? sad.gif

:(

I am so sorry you are going through this... you are not alone though and many of us on this board have experienced what you are going through. Please don't feel alone in this and many people here on this board including myself would love to help you out.

The fact that you had a positive tissue transgluamase test, means that you would most likely have celiac disease. How high were your results? When the doctor took the biopsy, he may have missed damage since it can be sporatic.

Like the others have said, one month is not enough time for most people to get better. Some people are lucky and feel better right away, but other takes months and even years. Personally, I was having problems for just over a year on the diet.

Also, make sure everything that goes near your mouth is 100% gluten free. Even things are are gluten free can be contaminated so you have to be careful. I have even messed up... About 6 months ago, I found out that I was eating humpty dumpty chips that were gluten free, but contaminated with gluten from the lines. I believe that this was one of the reasons why it took me so long to get better on the diet. Also, I was eating maple leaf gluten-free hotdogs last summer and stopped eating them for awhile, When I started eating them this summer, I started getting gluten reactions, so I contacted the company and they said that they could be contaminated with gluten from the facility. I believe that I didn't really notice the reaction last summer because I still having problems.

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Nancy- well said and thank you for saying what I was thinking. It's not that you want to die- you just want the pain to stop. I've finding this disease painful both physically and emotionally but every morning I wake up and hope that today will be the day that I feel even just a little better. Lately, I've been trying to focus on what is good about my life and what I CAN do and it helps. It's that small bit of hope every morning that helps. Find it wherever you can and keep to talking to us. We're all in the same boat (unfortunately, it can be a ver smelly, uncomfortable boat sometimes :blink: Beverly

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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