Your Opinion On My Symptoms Please

[samantha73]

Hi

I have just found this board and am hoping you may be able to help me. I have had a blood test for Celiac disease which came back negative but I am at my wits end just don;t know what else to do.

I have a range of weird symptoms which are driving me crazy. The main ones are include intemittent abdominal pain, bloating and gas, diarrhea, constipation, nausea, feeling sick immediatly after eating, sugar cravings, extreme exhaustion, sinus headaches and a feeling of fullness at the top of my stomach - like a brick is sitting there; when I have this I also feel like there is something at the back of my throat which is a really unpleasant sensation.

I feel that I am allergic to something I am eating but whatever it is, my reactions seem to be on and off. I can be OK for a week or so and then have an 'attack' that leaves me feeling terrible for days. Other times I just feel average all the time with a combination of some the above symptoms. If I eat any fat, just hours later I am in the toilet. If I eat much dairy, my stomach cramps and I am in the toilet, if I each anything with gluten in it, I immediately feel full - like I've eaten a 10 course meal.

I have been reading a lot about celiac disease and each time I read about it it's like a light is going off "yes, I have that, yes, that too..." I have a mouthful of fillings and my teeth just seem to develop cavities all by themselves; I have had on and off blistery sores on one of my elbows that seem to respond only to vitamin E cream; my bilirubin levels are high.... my B12 and iron levels are either really high or really low (at the moment high).

When I was pregnant with my 2nd child all of these symptoms were present all the time to the point where I just couldn't face being pregnant again it was so awful. Everything seemed to start after my 1st pregnancy - whether it is related or not - who knows? It's gotten worse since them and my symptoms also seem to get worse with stress.

My Dr has told me that I don't have celiac because the test was negative and my iron levels are high. He said my bilirubin levels were due to Gilberts syndrome which he said was nothing to worry about and unrelated. I am seeing another Dr for a 2nd opinion and in the meantime a dietician has even refused to help me with an elimination diet because she thinks I could have gall bladder disease (at 34 unlikley I think, and besides I had a scan for gall bladder stones just a couple of years ago which was negative).

If anyone can give some advice as to what to do I would be so grateful. I feel that all of my problems are related and that it is derived from a food intolerance. My mother has similar symptoms (not identical) and on the other side of my family my dad has and his mother had sinus and gatro problems forever. I am at my wits end and just need some help - I could cry in frustration. I have trialled gluten free food for short period of time in desperation and felt great after about a week of absolutely no gluten, but after getting a negative test result, I figured there was no point.

What do you suggest?

Samantha

[tom]

. .. . . . I have had a blood test for Celiac disease which came back negative but I am at my wits end just don;t know what else to do.

. . ..

. .. . . I have trialed gluten free food for short period of time in desperation and felt great after about a week of absolutely no gluten, but after getting a negative test result, I figured there was no point.

What do you suggest?

Samantha

Hi Samantha

Although you may NOT have celiac disease, it's very unfortunate both that the blood tests aren't all that accurate AND that your Dr isn't aware of this.

Here's a thread on the subject:

Open Original Shared Link

Secondly, positive response to a gluten-free diet IS, in fact, a valid test result.

Whether it's gluten-intolerance or celiac disease isn't as big an issue, to me, as feeling "GREAT".

So .. ..I suggest reading the thread at the link above, and going gluten-free.

An endoscopy is another option, tho I've heard of many whose results came back falsely negative - both the procedure and interpretation have subjective components.

Good luck Samantha!

[ellen123]

Samantha,

I'm no expert at this, having only started eating gluten-free myself about a month ago, and having no one to diagnose me but myself. Nevertheless, I just got such a strong feeling from reading what you wrote that you should trust your instincts, forget about what your doctor said, and start eating gluten-free again, right away! The reason why I didn't bother going to a doctor is that in my experience, MDs seldom understand, or think about, the effects of what we eat on our health. Doctors in the US are, for the most part, trained by the health care industry, and rewarded by the pharmaceutical industry, to cover up symptoms by prescribing medications -- the doctors whom I've seen over the years and taken my kids to as they were growing up just don't see motivated to really consider the overall picture.

Your symptoms seem so obviously related to your gastrointestinal system, and they match so many of the symptoms that others on this site suffer from, that I really feel you should go for it and help yourself. You don't need a doctor to explain away your problems -- if you know that you feel better when you stay away from gluten, then that's a reliable diagnosis! (At least to start. You may find out later, by carefully monitoring what you eat and how you feel, that there are other substances, instead of gluten or in addition to it, that are the culprit.) I know this from my own experience. I am one of the lucky gluten-sensitive people who doesn't, and hasn't, suffered from digestive/gastrointestinal symptoms - I have mainly suffered from chronic, intense, daily neck pain and headaches for many years, and more recently, pain in my feet and rashes that sound a lot like the DH that everyone else here describes. Because in the past my family doctor didn't have a clue what was wrong, and the neurologist she sent me to gave me only the most cursory examination, and the physical therapist he sent me to only gave me temporary relief, I just gave up on doctors and did my own research. Through this site and others, I got to the same point you're at now: my instinct just told me that I either have celiac disease, or at least, gluten intolerance. I now have no doubt that this was the right diagnosis. I read a lot more about how to embark on a real gluten-free diet and seriously, within a week I felt remarkably better, and now a month later, I'm absolutely convinced that gluten was what was destroying my nervous system (and I assume, my intestinal tract, even though I didn't have GI symptoms).

So please trust yourself! If, after going back to strict gluten-free eating, you don't find relief, then try something else: try eliminating other foods. I will leave it to the many more experience experts and veterans who use this forum to suggest a more systematic way to eliminate possible food culprits if gluten elimination doesn't resolve things for you. But please try it. Best of luck and I hope you get better soon.

Ellen