Cant Take It Anymore

[smile]

I really cant deal with this anymore. All the blood tests I have had are all coming back normal and no one seems to know what is going on.

I have been feeling sick most days for the last year or so. I have bowel movements 4+ times a day usually a short while after eating. My iron levels are low, which Im on iron tablets for. Ive not had a period in the last 5 months even though all my hormone levels are normal and I cant seem to gain weight. At the start of the year I increased the amount of food I was eating and Ive not gained a single 1lb.

I keep getting told I have IBS, I don't agree with it and no one has given me any help to ease my symptoms. I was prescribed colofac for quite a few months, it made no difference and I very rarely get stomach pains.

No one seems to be taking it seriously. Ive got an appointment to see a specialist mid June, but the feeling sick is getting me down. It seems too far away to wait. Plus if my results are clear whats the chance they are going to give me any tests.

I just dont know what to do anymore. Im tempted to cut out all gluten (a lot of what I eat contains gluten and i feel worse the more I eat of it), but I know if I do get any tests from the specialist it could come up clear.

I just cant cope with it.

[WheatChef]

Technically you do have IBS. Thing is that IBS is not a diagnosis, it's just a description.

Going gluten-free won't automatically make all of the test results void. They can make them less valid though, and since they don't start off as being severely reliable in the first place it is recommended to stay on gluten if you have an upcoming appointment. While a firm diagnosis may make a difference in your insurance, it shouldn't affect your decision to try the gluten-free diet eventually. There are false negatives on tests and often times doctors don't even know all of the correct tests to order. The only really conclusive test is whether or not you feel better on a gluten-free diet and then feel worse when you try and reintroduce gluten into your diet.

[Black Sheep]

You said "all" the blood tests came back normal---did one of those tests include the screening test for celiac? But even if it did, and it came back normal, that in no way means you're not celiac or gluten intolerant. My dr. told me (and everyone here will tell you as well) that the blood test is merely a screening tool, and a neg. result could mean nothing. She also told me that the intestinal biopsy is "the gold standard" for determining the disease; which I couldn't afford to have done because I'm uninsured, and visits to her are expensive enough! Even though her charges are far, far, less than a mainstream M.D.'s, who I try to avoid like the plague (she's and N.D.). So she told me to go off gluten for a month and see how I felt, and what a difference! No, I'm not suddenly bounding around with energy like the E. Bunny, as there's much, much, healing to be done. But there were very positive changes within that first month, and although I don't know whether I'm celiac or gluten intolerant....like my dr. said, "Does it really matter? What is your body telling you?"

Please don't get me wrong, by this I'm not saying you should not get any more tests! If you have the means, you might want to insist on the biopsy, and you have every right to. It's your body and your life, not theirs. If no one will listen to you, find an N.D. or even a more "mainstream" dr. who specializes in celiac disease, and get them to listen to you. There's also a stool test that you can do at home, from Entero Labs. Now as I've not done the test, I can't remember if it really "proves" celiac or not, or if it shows that you have the antibodies....sorry, someone who has more experience needs to elaborate on this, as I'm a newbie here myself. But I do know from my reading here that this test can be helpful, and you don't have to be eating gluten for it to work, like you do with the blood test. I don't remember whether or not you have to be eating gluten to do the biopsy; again, someone more experienced needs to advise you.

Mostly I just wanted to assure you of what I do know for certain, about the blood work only being a screening tool; and to encourage you to not give up! You have already gotten over one of the biggest hurdles, that being knowing that something is very wrong despite what the med. people are telling you, and even having a really good idea (which is most likely correct) that gluten is your problem. Now that you've passed those hurdles, you are the one in control and hey--if absolutely all else fails re. getting a firm diagnosis--you have every right go off gluten anyway, and see if conditions improve. Most people see at least some improvement within a month, but I've heard of a few who don't for a few months, so if I had to, I'd give it at least three months. I even know of perfectly healthy people who have no problem with gluten, but have omitted it anyway simply because they believe it's not much better than rat poison!

Oh and btw, I was sick for at least 18 years before my new dr. told me that she was almost positive that gluten was my main problem. I say "at least" because, with typical 20/20 hindsight, I see many signs of gluten intolerance from way back in my childhood. So really, I guess you could say I've been sick with one health issue after another for at least 45 years! But I'm not giving up, and if a middle-aged wimp like me can hang in there, so can you!

[smile]

Thank you both for the replies.

Im from the uk, so my tests are all on the nhs.

I couldn't take it anymore, I felt really ill. So I decided to try and go gluten free. Ive not had any gluten since last week tuesday and slowly but surely there have been some changes. The rash that Ive had on my chest for over and year and didnt respond to treatments (steriod creams etc) has almost completely gone. I was told it was two different things, one being contact dermatitis and two a yeast infection. So since both of those diagnosis Ive not changed anything like my clothing, washing powder and not had treatment for a yeast infection. Only difference is gluten free. My bowel movements have changed greatly. Im now going once a day at most, on the odd day Im not going at all. I also noticed that (a side effect of iron is black motions) after going gluten free my motions were black again after being on iron tablets for a month. I no longer feel tired (arms and legs) at work. The acne on my face that has been very aggressive, very red looking for over a year has started to clear up. The sickness has been much less than normal.

The only thing that hasnt improved is my weight. I know its only a week ago I started gluten free, but I seem to have lost weight instead of gaining. So I now weigh 7st 2 at 5ft 2, which is a low bmi.

The only time Ive had stomach pain and more bowel movements is when I had egg (eating in a cafe) and cheese. Both of which I dont feel agree with me. So I may stay away from them.

Do you think its still important I go to seem my specialist in June and explain all this. I dont want to waste their time or an appointment.

[WheatChef]

Congratulations on finding something that helps your health! It sounds like a lot of your symptoms are definitely improving as a result of going gluten-free which is more accurate than any sort of test results you could have received from a doctor. At this point I wouldn't worry about your weight so much. While your body was making all sorts of adjustments as a result of eating what it reacted to as a toxin (gluten) it stored up a lot of fat to help it adapt to the stress. Since you've removed this stress the body no longer needs this buffering fat and so it will end up getting rid of it. As your body heals your digestion will become even more normal and you will eventually be able to gain weight properly again. I lost 15 pounds when I first went gluten-free and have since gained back some of that, all in what seems to be muscle weight so I'm not complaining

The appointment with your specialist will be useful/useless depending on your doctor's attitudes towards celiac disease. Overall though it might not be a terrible thing to do because you can get your vitamin/mineral/glucose/thyroid levels checked to make sure you're improving at optimal rate. Some people continue to need supplements for sometime during their healing process in the early stages of the gluten-free diet.

[GFinDC]

I think in the UK you can get some cost re-imbursement for gluten free foods, if you are doctor diagnosed. If that is important to you then it would be good to stay on gluten until the tests are completed. But also let you doctor know that you want to be tested for celiac disease. I wonder if the doctor can arrange for the blood tests now, before the actual appointment? It is pretty simple to get the blood drawn and send it off for testing. Almost don't need a doctor for that except to order the tests.

We don't have this cost reimbursement in the USA. But if we did it wouldn't make much difference to me personally since I don't eat much processed food gluten-free anyhow. I don;t know if it would make much difference to your budget either, but it is something to consider.

You do need to still be eating gluten for the blood antibody tests to work.

[smile]

I don't know what to actually do now. My appointment with the specialist is on the 14th june and I assume it is just a consultation to start with. Back in october time thats when I had a blood test and was told I didn't have coeliac disease. However on two occassions my IgA level was raised. Many months passed of feeling ill and having a lot of symtoms. Two weeks ago I had a another blood test, which tested a lot of things. I know one of them was for the globulin level, which had a result of 33 G/L cal. I don't know if this means I definately dont have coeliac and maybe have non-coeliac gluten intolerance. So I dont know if I should go back onto eating gluten containing foods for when I see the specialist and see what they say, however I dont think I can cope with feeling sick all the time, feeling tired and going to the toilet all the time.

[nora-n]

If your rash is DH, then you need to get a biopsy close to it, as a diagnosis for DH means you get an official celiac diagnosis, and free gluten-free food or whatever you get.

I had this DH too for some years until I tried gluten free for some months. It came back on the gluten challenge and went away afterwards when I went back gluten free without a diagnosis.

I still need a biopsy during an outbreak. I have to make that a priority.

[smile]

The rash that I had confuses me because it didn't blister like DH, it was a red/orange colour over both sides of my upper chest. It would only become itchy when it began to dry out and all the skin would fall off, then the red/orange cycle would start again. At the moment this is the clearest it has been, you can only just about see the tinge of red/orange colour and a slight bit off dryness. Im seeing a dermatologist tomorrow for something else, its just a shame that the rash wasn't still there.

[Black Sheep]

Hang in there and keep us posted as to how your appointment goes!

[smile]

will do thanks,

also what does the Globulin in the blood test mean, what does it test for?

what would a reading of 33G/L calc mean?

Thanks

[Gemini]

  On 5/23/2010 at 5:16 PM, GFinDC said:

I think in the UK you can get some cost re-imbursement for gluten free foods, if you are doctor diagnosed. If that is important to you then it would be good to stay on gluten until the tests are completed. But also let you doctor know that you want to be tested for celiac disease. I wonder if the doctor can arrange for the blood tests now, before the actual appointment? It is pretty simple to get the blood drawn and send it off for testing. Almost don't need a doctor for that except to order the tests.

We don't have this cost reimbursement in the USA. But if we did it wouldn't make much difference to me personally since I don't eat much processed food gluten-free anyhow. I don;t know if it would make much difference to your budget either, but it is something to consider.

You do need to still be eating gluten for the blood antibody tests to work.

The UK provides a "prescription" for gluten-free foods, which are made for Celiacs in a gluten-free baking house. From what I have seen and heard, the food is horrible. You'd be better off buying or making your own gluten-free breads and treats at home. Many socialist countries have either a reimbursement system or gluten-free food obtained through a prescription, after the gold standard biopsy. It's a little deceptive because the money for the reimbursement comes from higher taxes on everyone so I don't think something of that nature would be a good thing for the US. The easiest way to control cost is by doing it on your own. Asian markets, sales on gluten-free foods at supermarkets and coupons, plus not eating too many baked goods/ breads to begin with will be more effective than relying on the government.

As for obtaining a diagnosis on the NHS, that's difficult because I think if your blood work is negative, it becomes difficult to find a doctor who will push for a biopsy and then insurance may not cover it. It may boil down to doing a dietary trial and having to figure it out that way. It's not much better here in the States, either....many doctors are not willing to go that route and label you as having the elusive "IBS" also!

[smile]

I dont know what to do about my weight, I look so thin. If I dont wear anything bulky I get told (from my parents) that from looking at me from behind I look anorexic. My back and shoulders look the worse, there is literally no fat on them at all. My wrists are way too thin, it actually worries me that they are not strong enough too cope should I have a knock to them. I don't think Im underweight yet, but not far off.

Another thing that I just wondered if anyone knew about is iron tablets. Ive been on mine for about a month now and I know a side effect is your bowel movements turn black. To start with mine did, but now they are just the normal colour. Does anyone know what this would mean?

Also my bowel movements seem to be increasing, the last few days Im going up, now three times a day. I feel like my body is missing something, an empty feeling. The thing is Im eating good amounts, but nothing is helping.

I dont know what is going on.

[kareng]

  On 5/28/2010 at 2:37 PM, smile said:

Another thing that I just wondered if anyone knew about is iron tablets. Ive been on mine for about a month now and I know a side effect is your bowel movements turn black. To start with mine did, but now they are just the normal colour. Does anyone know what this would mean?

Also my bowel movements seem to be increasing, the last few days Im going up, now three times a day. I feel like my body is missing something, an empty feeling. The thing is Im eating good amounts, but nothing is helping.

I dont know what is going on.

I've been on the iron for a few months. Are you taking it properly> Don't eat one hour before or 2 after. No other vitamins during this 3 hour period. This means drinking only water. If it bothers your stomach, a few bites of banana or apple. Absolutely no dairy in that 3 hour period. I had problems with it at first, but now I think I've gotten used to it & I don't need stool softener & they aren't as black as they used to be. Also, make sure to get some Vitamin C at a different time of the day. Some things I've read says it helps the iron absorption some said it didn't matter. Also, B12. If you do sublingual, you can take at the same time as the iron.