Help Please!

[lvpriest]

Hi all,

So, I've been reading the posts in this forum and others, and it's like FINALLY opening a door to just an incredible understanding of myself for the last ten years!! I want to ask a few questions of you all, of those who have been through diagnosis, mis-diagnosis, the ups, the downs, the pains.

By way of recent background, I was referred to a gastroenterologist about 1 month ago. He undertook an initial consultation, then sent me for 4 different blood tests - well, 4 viles of blood were taken, and I can only remember that one said 'antibodies' and one said 'celiac.' Then the next week was the second set of tests - an ultrasound, and a barium follow through.

I am seeing him in a week and a half to go through the results.

What do you think he was looking for? My symptoms are as follows:

- severe bloating

- pooing (sorry!) every time I wee, always floating poops and always so poorly formed (like large maltesers)

- episodes of insane diarrhea

- cramping, leaky gas feelings

- nausea

- rash in my hairline

- dry eyes and mouth

- depression - I have been on cipralex for the last couple of months

I have a history of 'anorexia' but I have never wanted to restrict just wanted to make my tummy feel ok, and not bubbling. I also suffer from poor concentration and a certain haze over my brain sometimes. I just don't know what o. My bloating after every meal excessive gas and bathroom runs are ruining my life.

Dairy sends my stomach insane straight away, so I always have soy cappuccinos (the only vaguely dairy orientated product I'm having in the last couple of weeks - avoiding cheese, and yoghurt). Anyway, in the last two weeks, on two separate occasions, a soya capu has caused me to literally have to run to the bathroom with incredible diarrhea. I'm constantly fatigued, irrespective of how much sleep I get, and I am underweight.

I guess what I'm asking for is your opinion! Part of me is so so scared is I'm going to go back to the specialist and he's going to tell me nothing's wrong - but I know there is!

Thanks everyone, these forums are an incredible support in my feelings of hopelessness!

[ravenwoodglass]

Oh boy do I know the fear of going in to a doctor and hearing nothing is wrong. I lived it for far too many years. I am a sero-negative celiac. I couldn't tell you how many times I was tested for it but no doctor ever mentioned the high rate of false negatives or told me to try the diet.

You do sound like you are in the right place. Don't go gluten free yet as your doctor may want to do an endoscopy if your blood work is positive. After all your testing is done do give the diet a strict try for at least a couple of months. If you choose to have an endo you can start the diet the day the endo is done. There are times when the blood work is strongly positive where doctors will diagnose then without the endo but most want that last test, which also has a high rate of false negatives.

The same area that is damaged by celiac produces the enzymes that help us digest dairy and some are able to go back to dairy after we heal. It would be a good idea to at least limit soy at first as some of us do have an issue with that. For your gluten free trial go with as much whole unprocessed fresh or single ingredient frozen food as you can. There is much to learn about the gluten-free lifestyle and your in the right place to learn it.

Also once gluten free make sure your meds, all OTC and script are gluten-free. You may find your depression resolves on the diet, many do.

[mushroom]

You have to be willing to listen to what your body is telling you, in addition to what your doctor is telling you. Your doctor can only tell you what his tests show (well, some are willing to think outside the body, but most stay within the testing box). You know what you live with every day and you know something is seriously wrong. From what you say it is most likely gluten causing you all the problems. So follow the advice of Ravenwoodglass, and give the diet a good trial no matter what the tests show.

P.S. If dairy and soy seem to be a problem you should also eliminate those, at least at first. If your gut is damaged you will have trouble digesting lactose until it heals, and many of us have problems with soy also.

[tictax707]

I can second so many things that you mentioned in your email. I was sick of doctors telling me I was fine when I knew I wasn't. I also know what it is like to not want to eat because empty is the only way my tummy is calm. Caffeine can be hard on your digestive system in general, so that may help explain that cappuccino incident. You are clearly ingesting something that your body seriously doesn't like. Even if you don't have celiac you may be gluten intolerant. Sometimes when your digestive system gets all inflamed it doesn't matter what you put in it, it will get mad. (even if it's foods that don't "normally" give you issues). Hopefully you will get some clear answers soon after all the tests. If its not gluten then you will have to do an elimination diet to figure out what it is, and it may not be just one thing your body doesn't like (just to prepare you...). Keep us posted on what the Dr says. I will cross my fingers for you getting some answers.

[lvpriest]

Oh thank you all so so so much for coming back to me so quickly!!!

So what should I do? Another week and a half-should I just carry on going with gluten in case the doc wants to other tests, or will the tests I've done be conclusive enough?

Xxx

[Skylark]

Looks sort of like my story too, especially the depression. Doctors never even suspected celiac. If you don't get a diagnosis, you can try the diet on your own. It sounds like you'd eliminate gluten, dairy, and soy for starters.

[mushroom]

Oh thank you all so so so much for coming back to me so quickly!!!

So what should I do? Another week and a half-should I just carry on going with gluten in case the doc wants to other tests, or will the tests I've done be conclusive enough?

Xxx

In the event your bloodwork is positive your doctor may recommend an endoscopy with biopsy. If you can hang on eating gluten until then I would probably do it, having come this far, unless he can't get you in for another two or three months in which case the additional torture (and damage) is probably not worthwhile in my book.

[sb2178]

I would call to see if the blood work is back and find out precisely which tests were ordered. If it is, communicate your misery and say you want to be put on their cancellation list or squeezed in earlier. (Got any lightheadedness? Dizziness? Additional weight loss?) After your follow-up, you can go gluten-free if there is no biopsy, but if there is a biopsy keep eating it.

The other thing to consider is whether you are financially and physically willing to do a biopsy (really pretty mild for an invasive procedure). If you are not, then go ahead and stop eating it unless a full panel was not run.

Full panel:

IgA AGA

IgG AGA

IgA TTG

IgA EMA

total IgA

(Sometimes the DGP is substituted for the AGA but the "brain fogginess" tends to be captured in the AGA, so far as the very limited research shows. If the DGP was used, you could also ask for the AGA which is a broader test that is less closely tied to intestinal damage.)

[charles76]

Hi, yes I agree caffeine can be difficult on your system, but it also helps counteract the brain-fog to think clearly about food options. I don't drink soy milk because I have a reaction I think due to the sweeteners (rice syrup is malted with barley sometimes) or the flavor (I'm sensitive even to the grain alcohol in vanilla extracts). While I may be unusually sensitive, it might be worth trying soy milk brands with that use only soybeans and water. Btw, I'm also sensitive to coffee itself, and drink tea and green tea (which is much easier on the system, though too much caffeine or sleeplessness by itself causes me digestive upset.

Keep trying though. I have had many, many doctors tell me I didn't have celiacs, and even had to do a second barium because they botched the first one. (They are looking for obstructions and diverticuli). Anyway, that was before most people had even heard of gluten, besides for pizza dough, so chances are better now for them telling you what you already can tell. And don't take them too seriously if they don't. An elimination diet (or finding an honest, knowledgeable alternative medicine practitioner) is, in my opinion, the most straight-forward common sense approach.

I just posted on another thread about my experience with setting up an elimination diet, called Elimination diet - Help!. You can also find it through my posts on my profile. Basically, meat, rice and applesauce, until you get better, unless you are extra sensitive like me.

Best of Luck!

[safefood]

Oh thank you all so so so much for coming back to me so quickly!!!

So what should I do? Another week and a half-should I just carry on going with gluten in case the doc wants to other tests, or will the tests I've done be conclusive enough?

Xxx

Trouble is, if you go gluten free now they won't be able to confirm celiac disease. My blood tests were not conclusive, ended up with a colonoscopy and that found the problem. When I used to eat white bread, one slice would put me to sleep within minutes. Also, was very depressed, because the wheat made me feel very tired and without energy to do much which mimic depression. Was diagnosed a couple of years ago but before had seen many doctors but was often misdiagnosed, including bipolar, (or as one doctor put it, manic-depressive with severe mood swings) and am no longer like that. Also, because of the damage from the gluten, for one year - no dairy products i.e milk, sour cream cottage cheese ( scrambled eggs were o.k.), and had to eat pureed vegetables during that time. I drank chamomile tea and water and rice milk without malt or barley. You Have to Read EVERYTHING on the labels of any food you consume unless you buy everything fresh and cook it yourself. I am also allergic to all fruit and fruit juices so that too is out of my diet. But this past year, I can now eat soft cooked vegetables, rice and mashed potatoes or potatoes without the skin. It takes time to heal.

[charles76]

Just adding an update to some advice I gave above. Been several years now and still can't digest any starches, basically at all.

So I live off steamed (shell easier) hard-boiled eggs, homemade brown sugar syrup, spinach (vit A!, and folic acid energy), celery, turkey, tuna, avocado oil, sometimes strawberries. Vitamin C powder in water is great. Some brands of dark chocolate for caffeine and histamine. MSG (Awake seasoning) ironically does wake up my nervous system in the dark winters combined with caffeine or fish oil). Falim gum is great for oral health (and salivary enzymes?) despite the BHT and artichokes and clams or scallops seem to help with energy. Allergic to browned proteins, beef in general (sad) and chicken make my soft tissue swell.

I've been trying Pure Encapsulations or Thorne pancreatin seems to help, and trying to work in vitamins (to see if I'm deficient, and for the vit Bs), and starch enzymes - but I'm allergic to many of them.