Negative Celiac Diagnosis - What Now?

[samantha73]

Hi everyone

I have just had a gastroscopy that came back negative for celiac disease. My blood tests were also negative. Now my Dr wants me to go and have more tests - for fructose and lactose intolerance. I don't want to because I already know I am lactose intolerance and don't fancy making myself sick on purpose! Plus, I know that gluten is a problem for me. I have decided to just eliminate it for a while and see how I feel.

So far it's been about 4 days and I immediately felt better - like my abdomen stopped feeling all tensed up. My question is - how long until I should really feel better? If I try and work out for myself what makes me feel better, how long should I persist with this? My other symptoms have been terrible fatigue, migraines and headaches, irritability, bloating, abdominal pain, odd bowel movements (ranging from diarrhea to constipation), mouth ulcers and a really foggy head; I have lost 12 kilograms in the past 4 years, which is how long I have had all of this happening for. Last year I also had this itchy 'rash' on both of my elbows that came on suddenly, drove me nuts and then went just as fast. Was it dermatitis herpetiformis? I don't know. Lactose intolerance also appeared last year.

I feel let down because I was told that "I am fine" by my Dr - pity that I don't feel fine. Any advice those who have 'self-diagnosed' can offer me is welcome. I just want to feel well again. I am at the point where almost anything I eat makes me feel bad.

Thanks,

Samantha

[mushroom]

I think you have made the right decision, Samantha. Lactose intolerance often goes along with damage to the villi in the small intestine because it is at the tip of the villi that lactase is produced to digest the lactose. If gluten has caused damage to the villi then you have difficulty with lactose and it just ferments in your stomach and causes gas and bloating and diarrhea.

Migraine, mouth ulcers, fatigue, foggy head, irritability, itchy rashes--you will find posts on this board littered with all of them. It certainly sounds like gluten is a problem for you even though all the tests were negative--a not uncommon occurrence. Unfortunately the tests are not infallible. And the damage to your small intestine has to be pretty extensive to be considered a positive; you really would not want to have this amount of damage if you could avoid it. And your recovery should be quicker with less damage.

Your question of how long for improvement is hard to answer because resolution of symptoms is different for everyone and often depends on the amount of damage that has been done. I do think that within two weeks you would be feeling a lot better. A lot of people initially feel loads better and then regress back to symptoms again and begin to doubt themselves. But often it is another intolerance rearing its ugly head--for me it was soy, for others it is corn, others cannot handle the casein in dairy either. But for some it is just the gluten. If you do find out some of your symptoms seem to come back it is best to revert to a very simple diet of fish, meat, fruit, vegetables, rice, nuts, seeds. If still not better, cut out the nuts and seeds. Once you have eliminated everything that gives you problems you can start adding foods back in, one at a time for 4-7 days, to see how your body handles it. This is known as an elimination diet and generally finds the culprit(s). It is often a good idea to actually start here because if you have other intolerances this method will enable you to feel better quicker and find out the other problems quicker. Also, you want to choose foods that are easy to digest. Don't eat things like corn on the cob; the brassica family (broccoli, cabbage, cauliflower, etc) can be hard to digest. Also things like apple skins too. Be kind to your tummy, eat comfort foods, like soups, rice puddings, cooked fruits and vegetables; just generally take it easy for the first month.

Good luck on your gluten free journey and come back with any questions.

[flourgirl]

Hi Samantha! You're absolutely not alone with feeling let down and disappointed by a doctor! There is just so much information out there, and still so much not really known, they can't keep on top of it all. Your doc still wants to look for answers, so that's a plus for him. He cares.

That said....I feel that you are on the right trac. Ultimately our health care is our own responsibility. You know what does/does not work as far as foods go. Stick with it. Every one of us is different as far as healing time and how long it takes to feel better. Some of us have other issues...that we get to eventually when problems don't resolve with our diets. Others feel much better in less time. The symptoms have such a broad range that makes it difficult to pin down.

Anyway...good luck and good health to you!

[JAMR]

Hi Samantha, I am self-diagnosed and despite many commonalities with celiac disease there are many, confusing variations.

For me taking it out of my diet did not make much difference even after 3 weeks (although I did not initially know what I was looking for). I did this a few times and also took out lactose, and yeast/candida - both of which are strongly associated with celiac disease. Eventually my skin erupted with DH and the final test for me was how my skin reacted when I reintorduced gluten back into my diet after a 3 week layoff.

Skin reacstions apear to take longer to appear and dissappear after changing diet. Digestive symptoms seem far more direct and immediate. I lost 6 kilos in as many months before I stopped gluten. It then took me 6 months before the weight started coming back (meaning it was static for 6 months).

DH took longest to resolve, however I stopped the itch using sasparillo - a natural herb. It also reappears last when I accidentally ingest gluten, and then stays longest. For me the best indicator is nature of the stool.

Other symptoms can take many months and years to resolve. It appears that all children will reoslve symptoms withing a few months, up to a couple of years. Adults take longer and many take between 2-5 years to resolve. Most noticebale for me has been better immune system, more energy, better skin, weight recovery, and just a general sense that I am wel, as opposed to struggling along. Its likely that many sufferers start as children with mild or unnoticeable symptoms, I was a fat baby, who became a skinny kid who would eat very poorly. Better as an adult, plenty of sport and a good diet, then allergies out of the blue. Plenty of deadends, not drugs, lots of herbs to assist various organs and body systems, but all short term results. Removing gluten looks like it could be the silver bullet, and I am optimistic of greatly improved health over the next few years, better than over the past few.

Be strict with diet and watch for associated food issues, especially from yeasts. Not sure about the scopes, blood tests, as I would not be negative to all as my diet is gluten free. I did test positive to the celiac gene. It only an indicator, but supported my diet results and skin to be DH.

Good luck with it.

[gfreegirl0125]

I was recently diagnosed with Celiac - Well I should say informally diagnosed - I was put on a Gluten free diet prior to the blood tests and biopsy by my primary doctor. The blood test results and biopsy results both came back negative - However - because I responded to the g/free diet so well the GI doctor said it is definately a Gluten Intolerance and what they consider "Undiagnosable Celiac" - where you respond well to the g/free diet, had multiple symptoms but they are unable to get a positive test result - She said I could go back to eating gluten for 2-3 months and she could re-do the tests if I wanted to see a positive result but I NEVER want to feel that way again - I fought with doctors for years who basically told me it was IBS-C - and I knew it was deeper than that and it's not worth eating food that makes me sick - I feel 100000 times better - So, if the Gluten Free diet works for you I would stick with it -

[MrsClaus]

Lactose and Casin (which is in dairy) can cause those problems. Yeast infections are common , yeast can attach it self to any organ in the body, even the brain. so you can feel foggy headed from Gluten and from Yeast.

You can find a dr. who will do a Pill cam and test the intestines for Celiac. Sometimes it does not show where dr. can reach, it is in the miles of intestines we have. you swallow it and it records all day. there is a dr. in AZ who is very good at it. cost is around $500 and is not usally covered by insurance. dispite what Dr. say you are your own best Dr. if your body is better without it leave it out!

stay away from processed foods, eat more veggies, no sugar and only grey salt like celtic salt for 6 months. you will feel better then as you introduce one food at a time you will be able to tell what does or does not bother you. There are other factors also, if your body is too acid etc. Hope this helps,

[spoticus]

My tests came back negative as well (biopsy and labs). I followed my primary doctor's advice and went gluten free anyway. I took a few months of weird things like rashes, low grade fevers, headaches as my body started recovering.

Going gluten free and dairy free has changed my life. I have had all the same symptoms you listed and they are all gone. I have been gluten free since September 08...

Then - for the first time was inadvertently exposed to gluten 4 days ago and am still sick. I never would have thought it... I've read other people's stories and couldn't imagine it.. but it is real. Immediate stomach burning and cramping, burping, nausea, gas ... it just kept snowballing into a migraine and still today my insides feel irritable and I look like Buddha's sister!

I think you should follow what feels good here. I think you'll be happier than ever.

There are a lot of really kind people here with so much information and advice to help....

Oh, and I don't know if you are concerned about this either but I still don't know what to say to others ... do I oversimplify it and say I have celiac or I'm allergic to gluten...and when is it appropriate to share .... I'm still working this part out myself. Just tonight some friends of ours invited the family over for take out pizza tomorrow night. I'll make a gluten free dish to "share" and help myself to that... and not worry about the rest.

Someone earlier referred to this as a journey..... sure is!