Please Help - So Many Questions

[fairydust81]

Hi everyone,

I'm new here and found this site after googling for more information. I have not yet been diagnosed with Coeliac disease however it's looking more and more likely that this is what I have. I'm off to the Docs in the morning with my food and symptom diary with a plan of having my bloods done.

Basically here's a little about me:

I'm 29 and from what I can recall I've probably been suffering with symptoms since I was around 18. However, this has been masked by the onset of severe endometriosis from the age of 13 - as a result of this condition i have had many laparoscopies and two years ago underwent a total hysterectomy with removal of my ovaries. During the hysterectomy the gynae noted that my bowel was attached to my abdominal wall and was in a mess, and if I had further problems I was to see a gastroenterologist - I;ve never really thought about my symptoms as being related until recently and suddenly it all makes sense and is all fitting together.

My symptoms started off really mild, irritating itchy rash on my arms, legs and scalp that was at first was diagnosed as scabies, then I was told it was eczema, then I was told it could be to do with my arthritis (I was diagnosed with a rare form of arthritis in January this year) and i have tried so many treatments all to no avail. I have always suffered with my bowels, spasming and cramping pains (truly horrible), bloating, constipation interlinked with diarrhoea. bad trapped wind and indigestion. Also suffer with headaches.

Just recently the intense itching is driving me insane, the rash is like clusters of red blisters which when scratched ooze a clear liquid, just horrible. It almost feels like I have tiny little creatures crawling all over me - at the moment my arms, shoulders, neck, scalp, back and legs are insanely itchy and I doing my best not to scratch them. i have so many scars on my arms from where I've scratched this rash in the past.

So the reason for posting is firstly what can I use to stop this itching, at least so I can get some sleep? I have not slept now for 48 hours due to this horrible itching and this in turn is making my headache all the worse.

I have been examining my diary and the one thing that stands out is whenever I eat anything containing gluten, bread, pasta, cakes, biscuits (even things I didn't think contained gluten), my symptoms worsen. So this is where I'm up to, I spoke to a pathologist I work with and he thinks it sounds like the gluten is causing it and it could be coeliac, hence why I'm off to the docs tomorrow. I have family members who've been diagnosed with coeliac so it's in the family.

I think after suffering with this horrible rash and bowel problems for 11 years that there has to be more to it, especially as nonw of the treatments are working.

What shall I expect at this stage? if it is coeliac I'm just not sure how I can cope with a gluten-free diet, I was looking at the ingredients lists on the food items in my cupboards and roughly 75% of it contains gluten, or MAY contain gluten, or was produced in a gluten containing factory etc... it's just such a daunting prospect.

I shouldn't worry so much, especially as I've not yet had the tests done, but I feel 90% sure that this is what is wrong with me. I guess I'm just preparing for the worse.

Anyway, ranted enough now, any helpful information from others in a similar situation would be really useful xx

[rosetapper23]

My gosh, you sound like a walking advertisement for celiac and Dermatitis Herpetiformis (DH)! Have you read some of the postings in the DH forum yet? There may be some threads on how people treat the itching until the rash eventually goes away after going gluten free. You should know, too, that iodine can also exacerbate DH, so you should eliminate iodized salt, seafood, and asparagus in addition to gluten. If your blood labs come out positive for celiac, you can skip the endoscopy in favor of having your itchy lesions biopsied instead....because if you have DH, you have celiac. If you have a skin biopsy done, you'll need to request that the dermatologist take a sample of skin JUST ADJACENT to the lesion and not from the lesion itself; otherwise, the test will come back negative.

From the sound of things, even if your blood tests come back negative (which happens with regularity), you might want to eat a gluten-free diet for a while to see if you start feeling better. If your rash clears up, you'll have your answer as to whether or not it is, in fact, DH and therefore celiac. As for the diet, I know that it seems difficult and complex at first, but that's only because people have become so accustomed to eating processed foods. Most people rely heavily on processed foods for the mainstay of their diet, but gluten-free eating is actually quite simple. If you eat natural foods rather than processed foods, you'll know that you're eating a gluten-free diet and don't have to worry so much--if at all--about cross-contamination. Many newly diagnosed celiacs follow a natural diet until their symptoms abate and then begin adding in gluten-free processed foods like bread, crackers, and treats. One of the best reasons for eating a natural diet at first is that your body will receive good nutrition, which is very important if the lining of your small intestine has been damaged. Also, many people react badly to either the alternate grains in gluten-free processed foods or the xanthan gum that is used to give the products a better texture. So, if you eat processed gluten-free foods, you may continue to have digestive problems and even think that perhaps you don't have a problem with gluten since you're still sick from "gluten-free" foods. Also, many celiacs cannot tolerate soy and/or oats (even the gluten-free kind), so you might eliminate them now and add them back in later to see if you have a bad reaction to either food.

I'm sure others will chime in soon with advice, but I'm glad that you've found us here at the forum. There's much to learn about celiac and DH, and this is one of the best places on the Web to receive honest, knowledgeable advice. Welcome!

[kiwibird75]

Welcome Fairydust! Wow, sounds like you have a lot going on... but you have taken the all important first step and started the process by making that appointment with your doctor.

Going gluten free is a process that can be as difficult or as easy as you choose to make it in a lot of respects, but the advice given by rosetapper is good - a diet of natural unprocessed foods in the beginning can make it all easier.

There is heaps of advice on these forums on the ways to make your life gluten free - and it's given by people much more knowledgable than me so I shall stop here and simply say... Welcome to the journey.

Wishing you health and happiness.

[fairydust81]

Thanks so much for your replies.

I have been to see my lovely GP this morning and he can't decide if it's an intolerance to wheat or if it's coeliac disease. So I've had my bloods taken to test for both wheat allergy and coeliac antibodies - I also have an appointment with a dermatologist on the 14th July to have a skin biopsy done. He wants me to go on a gluten-free diet once I've had the tests done (regardless of whether they're negative or positive) and see how I get on, so after skin biopsy I'll change my diet.

[domesticactivist]

Hi! Either way it does sound like once you get your testing done you'll want to eliminate gluten. It can be daunting to learn a new way to eat, but once you do you will feel so much better that stuff is likely not to even sound good to you any more.

I've written a post about how to eliminate gluten from your home. The site linked from my profile also has more about whole-foods eating and our story, and the services for hands-on help that we offer to people in our area. All the recipes on our blog are gluten-free. There are also great threads on the forums here on this site about what's for breakfast and dinner that can help you think of other things to eat.

Our family felt like crap when we tried to replace "regular" products containing gluten with other processed foods and alternate grains. Once we stopped trying to substitute it and got down to grain-free, real food basics we all felt so much better.