At My Wit's End...and No End In Sight!

[Sonja]

Hi there.

Let me apologize in advance for my no doubt "frustrated" tone, but I just don't know where to turn.

I'm almost 33, female, and by all accounts (i.e. the results of my physical last December) qualify as a perfectly healthy human specimen. Unfortunately that's not the case, and as my quality of life continues to decrease, and my doctor continues to "not communicate" my frustration is on the increase!

My symptoms are as follows:

November 2001 - Hospitalized with Erythema Nodosum - actual cause never confirmed

Symptoms experienced since release from Hospital in November 2001 (Note: these symptoms did not exist prior to the Erythema Nodosum reaction)

Constant/Daily (all the below increase in severity when bread or pasta etc. is consumed)

· Coughing/wheezing

· Painful/swollen joints - feet/knees/hips

· Incontinence

· Foul-smelling, very soft, bowel movements

· Bloating

· Gas

· Abnormally strong body odour

· Poor balance

· Fatigue

Intermittent:

· Severe nausea for 1-2 days or even 1-2 weeks at a time - usually no vomiting ever occurs and it disappears on its own with no apparent reason.

· Diarrhoea

· Cramping

· Headaches

· Dizzyness

· Inability to control body temperature (hot/cold) shaking/sweating

· Mild fever (after consuming bread, pasta etc. for several days in a row)

· Reaction to high-fat milk products (ice cream, whip cream etc.) severe gas and bloating followed by diarrhoea

· Bruise easily and they heal very slowly

· Fingernails split and peel at cuticle and ends

I re-approached my doctor about the above and after me getting quite emotional and upset (it has been 3.5 years of hell so far afterall!!) he reluctantly ordered some more blood work (I've been for quite a lot lately as you might guess). He would not speak to me about what he thought was going on - just handed me the test requisition and dismissed me.

Today I went back to get the results. I brought my spouse with me to be a stronger presence than I knew I'd able to be. No luck - and I just broke down once we got out to the car - even now I can't stop crying. The results he said were pretty much conclusive against celiac disease. The results were:

Endomysial Anti = Negative

Gliadin IgA Abs = 33 (< 20 is acceptable)

Gliadin IgG Abs = 5 (< 20 is acceptable)

When we asked, "well, if it's not celiac then what might it be?" and "what can we do to resolve this?" we were told "let's not speculate, shall we?". At that point, I was a mess, I wanted to go right for the biopsy, but the doctor seems convinced it's nothing to do with gluten at all.

There was a time when I'd be a good girl and take the doctor's word for it, but there's been too many mistakes made since I was 17 with regards to my health, and so I'm having trouble trusting, and I'm normally a very trusting person - detrimentally so in fact.

Plus, a year or so ago when I was told I had a "wheat allergy" (which has since been disproved by testing), I cut out all breads, pastas etc. and I did feel somewhat better in comparison to what is my normal state of discomfort. I doubt I was completely gluten free...but surely that's some proof that there's sensitivity at least?

In any case, my husband wasn't happy with the responses we were getting either. "Fine, if it's not celiac or gluten sensitivity then lets move on and work to find what it is" was his opinion. Instead, the doctor wrote me some more blood work requisitions (which again will take 3 weeks to come back he says). The tests he's ordered are:

Transglutiminase IgA Abs = currently being processed

Reticulin Abs = currently being processed

And me? Well, I just can't take it anymore. It's affecting my job, my life, everything. I'm having trouble hiding that there's something significantly wrong at work slowly but surely. I'm a good actress, but this is too much even for me.

So, I guess that's my sob story. I'm sorry to dump it on you all, but as I said, I just don't know where to turn.

My question to the group is this...should I keep pushing the issue, or should I just give in and accept what he thinks - that I don't have celiac or gluten sensitivity when my gut feeling (excuse the pun) tells me differently? I know I can't keep living in this discomfort, and he doesn't seem to have any thoughts on what to do to help me, so I'm at a loss.

Any advice you have will be received with heartfelt appreciation, and very much treasured. I feel so terribly alone.

Thanks.

Sonja

[SueC]

Hi Sonja,

Sorry to hear about your very frustrating situation. Have you have testing done for any other autoimmune dieases, ie lupus, rheumatoid arthriris, thyroid problems ....??? I would request a complete blood panel as well as your hormone levels checked. What about your vitamin B 12 levels? I am guessing your blood work showed no anemia..... Make sure that you are not borderline. I was 0.1 over the lower limit of normal so it wasn't flgged but it is still very low. On a gluten-free diet it has come up a little but hopefully will keep getting better.

Good luck to you and absolutely keep going until an answer is found. Request an MRI if your balance does not improve or at least see a neurologist, and I might try to find a more sympathetic doctor...sounds like you need a better one.

Let us know what you find out, and know you are not alone. Most people here can relate 110%.

Sue

[Sonja]

Hi Sue,

Thanks for your kind response. Yes, I've had a full immune work up done. Lupus, rheumatoid arthritis, thyroid. I'm beginning to feel a bit like a pin cushion really. All my hormones check out too, they did those separately, and similarly the vitamins. I've been told everything is 100% normal. They did an MRI back in November 2001 when the symptoms started (I believe they suspected Lupus) but it was also 100% normal. Re: my doctor. Sigh, yes. That was my conclusion too, but sadly we've got a GP shortage and that's the best I could do. I was lucky to get one at all, since I'd been waiting on a list for 3 years since we moved here. Lots of trips to the walkin clinic.

Thanks again for your kindness, this is a wonderful forum. I'm feeling a bit more at home here than I've felt anywhere for awhile.

Sonja

[Guest Lucy]

I don't have advice right now, but will ask for God's strength to you in my prayers. I'm sorry its so tough right now. There is nothing worse, than not having health.

Try going gluten free. What do you have to lose?

[Sonja]

Hi Lucy,

My thanks to you too! I appreciate your comments. I believe I *will* go gluten free after these next results are back. The doctor specifically said "not yet" to me today, so in the interest of not antagonizing him and ultimately causing additional problems for myself I'm going to hold off for 3 more weeks. I have however started reading up and I'll prep the household over the next few weeks so I can spring into action quickly. My husband has said he'll do it with me - I'm so very blessed I have him in my life or I'd be completely insane right now!

Sonja

[judy05]

Sonja, sorry you are having so many problems. I also have had many of your symptoms ( the peeling of the skin around the cuticles caught my eye (I never did figure that one out, but they cleared up after going gluten-free). I had one positive test (IGA 75). My doc insists that I don't have Celiac because I didn't have the gene, but I beg to differ with him because wheat and dairy make me sick. We go round and round about this but it is my body and I will never go back to eating gluten or milk again. Sometimes the diet is proof enough for a diagnosis. Why not try it ? It can't hurt and then you will know for sure. I have convinced my husband because he has muscle pain and tingling in his feet and he has been through all kinds of tests. We recently sent a blood specimen off to York labs, then maybe we will get to the bottom of his problems. I don't know why Drs are so Neg about food intolerances, all they want to do is prescribe pills. My husband also has a strong scotch-irish ancestery. That is one thing Celiac doctors ask you about. I wish you luck and hope you feel better soon!

[frenchiemama]

Don't give up. Make sure that all the testing that needs to be done is done. Also, have you been tested for other food intolerances? Those can have many of the symptoms of celiac.

[Sonja]

Hi Judy - thanks for your comments!

Can I just say "Wow...that sounds really frustrating". I just can't get over the situations like yours, like mine and like so many others that I've read about in this forum. The resistance to diagnosing this illness and any kind of food sensitivity period must be costing our various health care systems a mint! How sad it has to be so difficult!

That's interesting about your husband too - mine's Irish, and he has all sorts of weird things happening from time to time - I've mentioned he may be sensitive too, and to my surprise he readily agreed, and so he intends to go gluten-free with me.

Thanks for your comments too, frenchiemama.

No, in fact I've not been tested for any other food sensitivities per se - though I've had a full allergy scratch test (and then some) done. They ran out of room on my arms to give you an idea. With regards to going gluten-free anyways - as I mentioned to Lucy, I have decided I will do just that in a few weeks time. To heck with the diagnosis at this point. I just want to feel better, and I'd bet money, marbles or chalk at this point that a gluten-free lifestyle will do the trick.

Thanks again to you both - it is such a wonderful thing to feel understood!

Sonja

[tarnalberry]

If you know you're not going to be able to get a biopsy from your doctor, try the diet. If you think you might, then find a way to get one. (And don't forget that the doctor is providing you - his customer - with a service. You have every right to make certain demands.

[Sonja]

Hi Tiffany - Thanks!!

You know, that whole concept of being the customer occurred to me too!! Hmph!

I do believe I'll be a bit more, shall we say, persistant next time I see him!

And as for trying the diet, yes, I'll do that for sure.

Thanks again,

Sonja

[Guest nini]

I would say to def. try the diet and see how you feel. Remember that a positive dietary response is an extremely valuable diagnostic tool. If the dr. refuses to dx. celiac, maybe he will admit that your illness and hospital stay may have triggered a gluten intolerance which could lead to full blown celiac, but may not be there yet. Either way, if you feel better on the diet then you know that you need to stay on the diet. Also, the dairy intolerance may go away after being gluten-free for a while. It may not, but it may!

good luck.