Please Help Me >_<

[tama-chan]

Hey everyone,

I haven't posted in a while to try and sort some other things out. I'm still having pain everyday, and am trying to figure out if I do indeed have Celiac disease.

After they ran my blood test again at the specialist, he informed me that I do have the right gene that most celiacs have. But he said my blood work was "unlikely" or "undertermined" that I have celiac disease. I was not happy with this in the least, so I tried to get an endoscopy done, or something to check the villi. They wouldn't let me, and two doctors so far have refused.

My main symptoms are still there...

I have aggrivation right under my belly down to my pelvis, and when I touch it, it hurts a lot. At work work as soon as I start to bend over/crunch my abs in any way, they hurt so bad I could pass out. It will then just get worse and worse until I go and sit down and relax (which is difficult when trying to work). I have checked for a hernia, so I can only assume this is a bad digestive ache, but I have no idea...

That doctor also informed me that he thinks its not celiac because the symptoms I have are not celiac related. But I don't understand that... I have major constipation issues, and am hurting so much in that area, I thought celiacs can have this? I just want to enjoy one day where I don't feel pain anymore.

[KaitiUSA]

Yes, those are common problems with celiac.

If you have the gene and symptoms then likely it has been activated. Your doctor sounds like a complete bonehead who is not updated at all on celiac.

The doctors get paid enough many so change doctors and go to one and request it be done..you are paying and you have reasonable belief that it is celiac.

Have you considered an Enterolab? Or just trying the diet to see if it helps since you know you have the gene and symptoms?

[tama-chan]

Yes, those are common problems with celiac.

If you have the gene and symptoms then likely it has been activated. Your doctor sounds like a complete bonehead who is not updated at all on celiac.

The doctors get paid enough many so change doctors and go to one and request it be done..you are paying and you have reasonable belief that it is celiac.

Have you considered an Enterolab? Or just trying the diet to see if it helps since you know you have the gene and symptoms?

<{POST_SNAPBACK}>

I haven't heard of Enterolab before, but they gave me the "Celiac Plus" test when I had my bloodwork taken. Thats when they couldn't determine if I had it or not, but I had the gene for celiac disease. About the diet, I did try for seven days (thats what was prescribed by my doctor) but didn't feel an improvement. I even inquired about some people needing more then just a week, but he shook his head at me.

I've been trying to get another specialist, but the closest one is almost into next year. Re-doing the celiac free diet is probably my best bet, but I've been worried/concerned out of my mind because I don't even know if I have it with my symptoms.

Thank you again for all of your info!

[Rachel--24]

I think if you have a problem with gluten you definately need to be on the diet more than 7 days to feel better. I think you should stick to the diet a little longer...its certainly not going to hurt you and could possibly be the answer to your stomach pains. I think especially since you have Celiac genes and symptoms you should try it. Enterolab tests for antibodies in the stool....its more sensitive than blood tests. They also do gene testing but you already know you have the gene. I used Enterolab and would recommend them. Also you don't need to eat gluten before doing the test.

[elonwy]

Doctor's can be shmucks. Instead of waiting the month to follow-up on my biopsy I have just gone Gluten Free because I got sick of waiting for my doctor who was hemming and hawing about what could be wrong, how "bad" I have it, which is crap, there is no such thing as " well I have a little bit of celiac".

Depending on how long its been going on, there is a good chance it could take a lot more than 7 days for you to feel better. I saw immediate results after 4 days, then have tapered off due to accidental exposure, and i think that if you're going to test it that way it should be for a lot longer. All the medical journals talking about diet challenge talked about Gluten Free for 6 months, then a gluten test AFTER that length of time. I think maybe you should fire your doctor. I fired mine. They don't know everything and only have a liscense to "pratice" medecine. Sorry. I'm ranting a bit but it just makes me so mad.

This is about YOU and about how YOU feel, and if you think he's wrong, argue with him, or better yet ask somebody else. It took them 6 months to figure out what was wrong with me and I'm one of the lucky ones who found out quickly.

I hope you feel better and figure out what's making you sick.

Elonwy

[Carriefaith]

But he said my blood work was "unlikely" or "undertermined" that I have celiac disease.

I would ask your doctor for specific numbers here and what tests were done. Your doctor is being very vague. Very mildly elevated results can still mean that you may have celiac. My grandmother had very slightly elevated blood test results and she had intestinal damage.

That doctor also informed me that he thinks its not celiac because the symptoms I have are not celiac related. But I don't understand that... I have major constipation issues, and am hurting so much in that area, I thought celiacs can have this?

Some people can have no symptoms at all and still have celiac disease. I know someone whose only symptoms were anemia, fatigue, and a lack of energy. Personally, I think you need to switch doctors and start fresh. I don't know how easy this is to do in the US, but I think it is worth a try.

[tama-chan]

Thanks again everyone, you have been a big help.

Yes, my doctor will remain namless but he is only person I ever met who treated me like dirt, and didn't believe anything I say. I went in with an open mind like everyone else and a smile, but it didn't help. I guess the main thing that ticks me off is if they can't find the problem by testing means, they will assume it is a mental problem. I can tell you right now that I have a great life with my family, my friends and I love my work. The only thing that has broken me down and frustrated me is my pain in my body. >_< But yea, I am really starting to hate doctors and am thinking that they really don't care. After 8 months of being in pain and progressing, you would think someone would figure that something needs to be done as soon as possible.

I am going to continue the celiac free diet then, and look into the labs. Thank you again everyone.

[tama-chan]

I forgot to mention another detailed time of pain that happens to me:

As soon as I wake in the morning (doesn't matter what time it is), for about 20 minutes I'll have the worst pain in my lower gut (as bad as when bending over/kneeling down). Does anyone know why this could be? Have any of you who has celiac been in pain as soon as you get up before you were able to treat the problem?

[happygirl]

Keep pushing for answers-You are your only advocate!!!

[judy05]

I forgot to mention another detailed time of pain that happens to me:

As soon as I wake in the morning (doesn't matter what time it is), for about 20 minutes I'll have the worst pain in my lower gut (as bad as when bending over/kneeling down). Does anyone know why this could be? Have any of you who has celiac been in pain as soon as you get up before you were able to treat the problem?

<{POST_SNAPBACK}>

Besides Celiac you could also have IBS (irritable bowel syndrome). People with IBS have an abnormal amount of air/gas in their intestines. These sometimes are first symptom that lead people to see a GI doc. Your symptoms sound a lot like mine. My GI doc recommended Citracel tabs 2 every day to start followed by plenty of water. I never start a meal unless I take these pills or some "soluble fiber" like a banana or applesauce. There is a website, I think it is called eating for ibs, which can explain the whole concept of IBS. Perhaps you could try this along

with going gluten-free. If I don't take the fiber pills every day then I develop the same kind of pain. My doctor was helpful that way but he is convinced that I don't have Celiac or gluten intolerance. He insists that I can eat wheat and dairy because I don't have the gene. He and I will not be seeing each other again because of his attitude.Good luck to you!

[Rachel--24]

I guess the main thing that ticks me off is if they can't find the problem by testing means, they will assume it is a mental problem. I can tell you right now that I have a great life with my family, my friends and I love my work. The only thing that has broken me down and frustrated me is my pain in my body. >_< But yea, I am really starting to hate doctors and am thinking that they really don't care. After 8 months of being in pain and progressing, you would think someone would figure that something needs to be done as soon as possible.

<{POST_SNAPBACK}>

I went almost 3 years in pain waiting for the doctors to do something. Not even when I was down to 94 lbs, experiencing massive chemical sensitivities, could barely hold my head up and was unable to eat from extreme nausea...did they help me. What they did was send me to the psychiatrist who I think was astonished that they would think she could help me...she told my doctor that this was nothing *mental* going on. I think she was the only person with any common sense. What I'm trying to say here is to not waste time thinking that they are all of a sudden going to care about what you're going through. It never happened for me...only caused me frusteration and anguish....making me feel worse and less healthy. If you suspect gluten is a problem for you take it out of your diet...you don't need meds for celiac disease or gluten sensitivity so you don't need the doctors. I had to take my health out of the hands of the doctors and take control of my own situation in order to get better. I am soooo much better now than I was back then. I got my results from Enterolab and I'm looking forward to getting my life back.

[KaitiUSA]

Yes, the typical response from a doctor if they can't figure it out is "it's all in your head" I was told over and over by more then one doctor that I was fine. All of my ER visits when my blood tests came back normal they said I was fine. Just don't believe that for one second. Your body is telling you there is something wrong.

[tama-chan]

My specialist called me up and said that they will schedule me for a small intestinal Biospy (or endoscopy). Why they didn't do this before is beyond me, and from what they told me before, the upper GI tract scan is the same (which I know now is NOT). I can't get in until Oct 4th, but thats life I guess.

Could someone tell me if they do this small intestine biopsy, if I have celiac they can 100% detect it that way right? I know they have a stool sensitivity/gene testing (which I know I have the gene), but will my villi be hurt, and will they see this? Sorry I'm getting worried again, I just want to make sure they look for everything...

[judy05]

My specialist called me up and said that they will schedule me for a small intestinal Biospy (or endoscopy). Why they didn't do this before is beyond me, and from what they told me before, the upper GI tract scan is the same (which I know now is NOT). I can't get in until Oct 4th, but thats life I guess.

Could someone tell me if they do this small intestine biopsy, if I have celiac they can 100% detect it that way right? I know they have a stool sensitivity/gene testing (which I know I have the gene), but will my villi be hurt, and will they see this? Sorry I'm getting worried again, I just want to make sure they look for everything...

<{POST_SNAPBACK}>

The upper GI is usually an x-ray at which time you swallow barium and they follow it on the screen. It can diagnose reflux but not Celiac. When they do the Endoscopy they can tell if the villi are damaged or if there is a any redness or irritation, like the Barrett's Ring they found on me. Also they take several pieces of tissue from different areas to be sent away for biopsy. You have to wait several days for the results but you will find out that day from the doctor if the villi are damaged. This is never 100% because maybe the Dr isn't that familiar with the procedure or he may take samples from places that aren't damaged. This way you could have Celiac and have a negative biopsy. This has been called the "gold standard" in the past, but they seem to use the ttg test to verify intestinal damage. I was fortunate in a way because I didn't have any damage, my biopsy was neg, my ttg was neg and i don't have the gene for it, but, after 2 years on the gluten-free diet I cannot tolerate gluten, dairy, yeast, egg whites or corn. I try every once in a while to eat some of these things, but never gluten. I hope my rambling helps, if you have any more questions, just post them.

[Carriefaith]

Could someone tell me if they do this small intestine biopsy, if I have celiac they can 100% detect it that way right? I know they have a stool sensitivity/gene testing (which I know I have the gene), but will my villi be hurt, and will they see this? Sorry I'm getting worried again, I just want to make sure they look for everything...

If you are gluten free right now then you could get false negative results on the small intestine biopsy. You have to be consuming gluten for the villi to get damaged. If they take a lot of biopsies, then they will most likey find damage. Villi damage can be patchy so they could miss the damage if only 1 or 2 biopsies are taken, so make sure you request at least 5.

[Jen H]

Hi Tama Chan,

I am sorry to hear that you are feeling ill. I experienced several of your symptoms and I was just recently diagnosed with celiac disease last week. I would wake up in the morning with horrible pain right under my sternum. This pain would last through most of the day and I would also get nauseous. It got to the point where I was afraid to eat because I had a feeling I was becoming sick because of food. It became so bad that I finally had to leave my job as a teacher.

Anyways, one suggestion I have is to go and get your lab results from your doctor's office. You should always have your results and that way you can share them with another doctor, should you need to. My very first tTg test was borderline, but my endoscopy clearly showed I had celiac disease. My doctor hemmed and hawed as well and I probably should have been more assertive with him. My second GI doctor told me that there are three ways to detect celiac disease. One way is through a blood test. A second way is through an endoscopy with biopsies. The third way is through the patient's symptoms. She told me that ideally, celiac disease can be officially diagnosed when the blood test, biopsies, and symptoms are all positive, but that is not the case with most people. Some people only have a positive biopsy and a negative blood test.

Perhaps you could ask your GI doctor to have the endoscopy sooner. Two months is a long time to wait. Call the receptionist and see if you could be put on the waiting list if there is a cancellation. Also, see if you can find a good GI doctor in your area, someone who specializes in celiac disease. There is a thread posted in this forum about doctors. Ask around and see if you live near a good one.

Hope that helps! I know it's a lot to digest. I hope you get some answers soon.

Jen

[tama-chan]

Oh wow, 2 to 5 Biopsys? Okay I will try, but I'm pretty sure my doctor will not let me. They are already angry at me because I continue to pester them to get this test done. I continue to eat gluten then I guess... I just hope they don't take false information or anything.

Thanks again!

[gf4life]

Oh wow, 2 to 5 Biopsys? Okay I will try, but I'm pretty sure my doctor will not let me. They are already angry at me because I continue to pester them to get this test done.

The 2-5 biopsies is really only small tissue samples taken from the inside lining of the intestines. Ideally they should take at least 5 from different areas and as far down as they can go with the scope. Otherwise they risk missing damaged spots, since in most people the damage from gluten is patchy and not all over the entire intestines.

You should stay on gluten until after the test is finished.

Also you said that one week on the diet you did not show improvement. It takes a lot longer than a week for most people. Also you need to probably cut out dairy at least at the beginning, since if you do have damage in the intestines you won't be properly digesting the lactose in the dairy products.

I also get a lot of pain in my lower intestines. Before I was gluten-free (and when I have a gluten accident) I would produce a LOT of gas in my intestines. It would accumulate during the night and in the morning I would have a lot of pain until I was able to pass most of the gas. I also would have to make time in my schedule to be able to relax enough to have a bowel movement after breakfast. If I didn't make this time then by that night the pain would be bad and the next day worse.

I still get some pain occasionally, certainly not as often. Some is from gas, some is from constipation, some is from inflammation in my colon(the only thiong they found from the colonoscopy) and some is from yeast overgrowth from the slowed digestion (self-diagnosed with that). I take a pro-biotic supplement and this cuts down on a lot of the yeast, the gas and a lot of the pain. My constipation is less frequent also. My doctor isn't sure why I have inflammation in my colon, but I am pretty sure it is either from the gluten, or at the time from the milk or yeast. It is a lot better now.

Also I get that severe pain you mentioned (that feels like your have a hernia) and it is a lot worse when I take antibiotics. I practically have to wear a girdle because it feels like my insides are trying to fall out of my belly through my skin. And I cannot bend over without almost passing out from the pain! I think it is mainly irritation in the intestines, like a raw spot, that hurts terribly whenever food/waste passes through that area. When I get that it is mostly in a spot near my belly button (sometimes above and to the left, and sometimes just below). I do not have a hernia either. But I have thought that maybe it also has to do with some scar tissue. I had two surgeries through my belly button and abdomen (tubal ligation and gall bladder removal) and sometimes it feels like the pain is very near the incision sites. Of course my doctors have no idea what is causing the pain and I haven't pushed the issue to make them find out. They have already done almost every test imaginable on me and nothing shows up. For a while I was also having pain in and around my liver, with elevated liver enzymes. They never figured that one out either and eventually the pain went away.

I hope that you can get through the next two months without too much pain. It sounds like you won't have much luck getting the test moved up to a closer date, but it would be worth a try.

God bless,

Mariann

[tama-chan]

Wow! Your type of pain and circumstance almost sounds identical to mine! Okay, I guess I misunderstood before; I thought 2-5 biopsy's meant that I would do a endoscopy 5 times. So I believe they are going to check all the small intestines as best they can...

As for the pain in morning, I do pass a lot of excess gas through out the day, and especially in that morning where I have lots of pain built up when I wake up for 20 minutes. I will stay on gluten then and see what happens on October 4th. Thank you for your shared experience!