IBS or CD??

[Blondie]

Hi - first entry so here goes... For 15 years I have suffered stomach problems, mainly bloating with huge amounts of wind every single day, this is accompanied by some minor constipation and diahorrea, sometimes my stools float and are hard to flush away . Doctors dont care and I've been told I have IBS. I have had a wheat allergy test some years ago which proved negative - is this the same as testing for CD? I took a food intolerance test and a long list of foods were positive including most grains and gluten. I have been paying privately for a nutritionist the last few months who found a bacteria which I took antibiotics for, low good bacteria for which I take probiotics and minor candida. I have been on a anti candida diet and have omitted all gluten grains except oats. I feel a lot better but still have some problems. The only thing that really helps my stomach are the probiotics. On top of stomach problems I have low energy, and I'm tired & heavy headed every day with varying degrees, sometimes I feel 'not quite here', if I go to the gym it makes me feel worse so I dont go anymore. Could I have CD and if so should I go back to eating gluten grains to obtain a diagnosis?

Sorry for the long post.... this forum is very imformative and may be just the avenue I need to go down. Thank you.

[cruelshoes]

Wheat allergy is not the same as gluten intollerance, so Celiac would not have shown up on those tests. IBS is a general catch-al that doctors use when they don't know what else to call it (helpful, isn't it? ) Are you avoiding all gluten now (wheat, barley oats and rye)?
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Kathie]

Welcome to the group!

Your symptoms are very classic CD, and to get an accurate test you have to be on gluten

I would recommend a starting point of reading the links found in the forum area under the Sticky's for Diagnostic info. It gives you a list of the tests to have run for CD and lots of other good information. (I am not as good as Al at pasting the links here for you. Sorry!)

Good luck.
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CD by Biopsy 3/25/88

[Blondie]

Cruelshoes - Thank you and in answer to your question, I'm currently avoiding wheat, barley and rye but not oats. I eat a lot of oats as I have them for breakfast along with some other grians and also as oat cakes. Could these be a problem too as I thought most people can tolerate grains when diagnosed CD?
Kathie - Thank you also for your advice, I will have a look at what you've suggested. I have never thought there would be a chance my symptoms could mean this. I've always thought as someone with CD as someone REALLY ill and losing lots of weight etc. I'm going to have to start eating some bread and take the test. My doctor's appointment is on Wednesday, where I will discuss this further with her, if it hadn't have been for this forum I probably would never have booked it!

ALSO - Is is classic CD that good quality, high strength probiotics help with stomach symptoms? They are the only things that have helped.

[Kathie]

The issue of oats is twofold, one they are still debating whether it is safe for us to eat oats of not, the general feeling by scientists now is that they should be safe but then the usually say in small doses. The problem is that most oats you can buy in the store are contaminated with wheat, either in the combined ingredients or in the field and processing plant. I think for most of us the jury is still out on oats and so we avoid them.

The probiotics could be helping you to continue to digest food in spite of the damage done, I would guess long term if its untreated CD they would begin to loose their effectiveness. Just an opinion, I don't have anything technical to back that up either way.
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CD by Biopsy 3/25/88

[Noatak]

Blondie....you need to be tested for CD and I'm quite surprised that your doctor didn't run these tests because firstly, you are British and the British are THE nationality that has a high rate of CD and secondly, I've read that Europeans are far more likely to be diagnosed than Americans as it's so well known and prevalent. I totally understand your frustration though....been there myself, including candida problems. Yes, a candida diet, coupled with probiotics will alleviate many CD symptoms as to be successful with a candida diet, you have to cut out all the carbs....where gluten is! However, the oats may be causing you a problem right now as you are aggravating (possibly) your system with other forms of gluten. I travel to the UK often and am familiar with your lovely country....don't eat the oat cakes! They most likely contain whole meal flour also!

When you go to the doctor, demand the bloodwork for Celiac's and the list of tests is given somewhere on this forum. You can continue the probiotics, as long as they don't contain any gluten (which they probably don't as they make you feel better) as your intestinal tract is all messed up and taking the good bacteria can only help! I know how notoriously slow the health care system is in the UK but be insistent. You will have to continue eating some gluten for the test to be accurate but you don't want testing to take too long or you could end up VERY sick if you do have CD.

Good luck and keep us updated!

[Fidissimus]

As per Al:

Usually they start with a set of blood tests called a Celiac Panel that should consist of these tests:

antigliadin IgA and IgG (indicates gluten sensitivity)
anti-tTG and/or anti-endomysial (more specific to intestinal damage)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (a very thorough doctor will include this)

Please ask your doctor to run ALL of these tests.

To save cost, they will often reduce this panel down to a single test...usuall the anti-tTG. Don't let this happen to you! The reticulin antibody no longer shows up on most diagnostic flowcharts either. This test has fallen out of favor, although a positive result can certainly be an important clue. Many "experts" are now considering the antigliadin antibodies optional as well. It is said antigliadin antibodies are not specific to celiac disease, but they are often the first to show positive in early stages of celiac disease. A thorough doctor will run them all.

If the blood test come back positive, they may want to scope you to check for intestinal damage (the gold standard for Celiac diagnosis).

Click here for more info on diagnostic testing
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Also I've heard that you should be eating gluten for a min. of four weeks before you have your tests run... with four months being a better time frame for being on a gluten filled diet to get a more accurate diagnosis.

_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[Blondie]

Blimey, you are ALL so helpful! Thank you SO much.

I have suffered with these symptoms for about 15 years now and there hasn't been even one doctor who has suggested that this could be my problem, and I've seen many. They say things like 'eat one apple less a day' or 'dont think about having a bad stomach because it will make it worse'..... I'm NOT joking!!! Maybe I should pay a visit to The States and see one of yours, sounds like they would be a lot more understanding

I guess I will have to pay a visit to the supermarket bakery tomorrow and invest a lot more probiotics to get me through the next few weeks until the test!! It may seem strange but I hope I DO have it as at least then I can do something about it and control the symptoms. You've been great guys, thanks once again.

[Noatak]

As for your coming to the States to see an American doctor, you may get the same runaround as you did at home. Many, many people have had the same experience as yourself with regards to smart alecky remarks or stupid advice from physicians, Blondie. Most folks here went years before a proper diagnosis so we know how you feel and what you are going through....trust me! I felt the same way as you regarding diagnosis....I was actually GLAD I had Celiac because that meant I wasn't crazy and now that I've been GF for 1 year now, NO STOMACH PROBLEMS ANYMORE!!!!!!!

If it is CD, we will then fill you in on where all the good GF food is!

[Blondie]

There is hope for me yet then!!!

[Blondie]

[aklap]

[Blondie]

Great, thanks. It's really expensive isn't it? Cant see my doctor running all of these tests as recommended though but no harm in asking!

Just had bread for the first time in 3 months so I can get an accurate test and it's sitting rather heavy on my stomach.... hope I will feel ok.

[Blondie]

I'm so upset. I went to my doctor today and asked to have the tests. Apparantly I had the EMA test January '05 - negative. She said that's the only test they do but is prepared to do it again which I shall do in about 6 weeks after I've been eating gluten again. She has refused to refer me to the Gastroentreologist (have I spelt that right?!!!) unless my blood test is positive so there is NO way I can have the biopsy unless this test is positive. She didn't agree that these tests can be inaccurate. She suggested some medication for IBS which she describes as being in a group of anti depressants but can be used for pain relief for things like migrane also, cant remember the name as I was too upset. At that point I brought the consultation to an end and left feeling stupid and paranoid yet again vowing never to return with this problem. Maybe I should just accept I have IBS and get on with it?!! If the biopsy is classed as the 'gold standard' and I cant have that and the tests dont always detect it what can I do?

[mrsppmrxky]