Frustrated/my Body Is Not Happy.

[blondie1985]

There is SO much, so I apologize if this seems scattered. I don't even know where to start. I was diagnosed with celiac back in September of 2010. Prior to my diagnosis, I was told by multiple dermatologists and doctors for 9-10 years that I had eczema. I saw a new dermatologist and asked about said eczema who decided to biopsy an area of my "eczema" which was when he confirmed that it was in fact DH. He did a celiac blood panel and confirmed. I have been (to the best of my ability) completely gluten-free ever since, with a few accidental "glutenings." I guess I just don't FEEL right. I have periods of regularity - my poop is normal, I feel good, blah blah blah. And then I have periods like as of recent where I'm always bloated, my body doesn't like ANYTHING I eat, I'm constipated. I get a sour stomach after meals at times, and I get an anal fissure or a small hemorrhoid every so often and I pretty much want to die. I'm just frustrated. I feel like I get the run-around at the military/naval hospitals (my husband is military). I don't know WHAT to ask for and if I am even allowed to demand WHAT I want. I know a lot of people request intestinal biopsies with a celiac diagnosis to survey the well-being of their intestines after gluten-damage to the villi. Is that necessary though? I'm just worried. I want to feel normal, be regular, etc. Like I said, I just don't know what to address/ask for/demand/request, etc. and I always feel rushed and made to feel ridiculous and like a sort-of hypochondriac at military medical facilities. Thoughts?

[mushroom]

There is SO much, so I apologize if this seems scattered. I don't even know where to start. I was diagnosed with celiac back in September of 2010. Prior to my diagnosis, I was told by multiple dermatologists and doctors for 9-10 years that I had eczema. I saw a new dermatologist and asked about said eczema who decided to biopsy an area of my "eczema" which was when he confirmed that it was in fact DH. He did a celiac blood panel and confirmed. I have been (to the best of my ability) completely gluten-free ever since, with a few accidental "glutenings." I guess I just don't FEEL right. I have periods of regularity - my poop is normal, I feel good, blah blah blah. And then I have periods like as of recent where I'm always bloated, my body doesn't like ANYTHING I eat, I'm constipated. I get a sour stomach after meals at times, and I get an anal fissure or a small hemorrhoid every so often and I pretty much want to die. I'm just frustrated. I feel like I get the run-around at the military/naval hospitals (my husband is military). I don't know WHAT to ask for and if I am even allowed to demand WHAT I want. I know a lot of people request intestinal biopsies with a celiac diagnosis to survey the well-being of their intestines after gluten-damage to the villi. Is that necessary though? I'm just worried. I want to feel normal, be regular, etc. Like I said, I just don't know what to address/ask for/demand/request, etc. and I always feel rushed and made to feel ridiculous and like a sort-of hypochondriac at military medical facilities. Thoughts?

Hi blondie, and welcome.

It can be hard dealing with the military medical system (although I must say they did right by me many years ago - even if they did destroy all my records ) Very frustrating to have a diagnosis within your grasp10 years ago, only to waste another 10 years of your life grasping at straws.

So now you have been gluten free for a year and a half and still don't feel right. What has been going on in that 18 months? Did you go lactose free initially as is recommended for all celiacs because of the temporary destruction of the enzyme that digests lactose? Did anybody test you for nutrient deficiencies that most celiacs have that need to be supplemented? Did you know that it is possible to have other food intolerances (sometimes secondary to the 'leaky gut' that gluten causes) that only manifest themselves after you toss out that bully gluten that is the big boss and kicks everyone around? All these things could contribute to your not feeling right if they were not addressed. So tell us some more about what's been happening to you and how you have been treated.

[blondie1985]

Hi blondie, and welcome.

It can be hard dealing with the military medical system (although I must say they did right by me many years ago - even if they did destroy all my records ) Very frustrating to have a diagnosis within your grasp10 years ago, only to waste another 10 years of your life grasping at straws.

So now you have been gluten free for a year and a half and still don't feel right. What has been going on in that 18 months? Did you go lactose free initially as is recommended for all celiacs because of the temporary destruction of the enzyme that digests lactose? Did anybody test you for nutrient deficiencies that most celiacs have that need to be supplemented? Did you know that it is possible to have other food intolerances (sometimes secondary to the 'leaky gut' that gluten causes) that only manifest themselves after you toss out that bully gluten that is the big boss and kicks everyone around? All these things could contribute to your not feeling right if they were not addressed. So tell us some more about what's been happening to you and how you have been treated.

I have not eliminated any other foods. As soon as I was diagnosed, I moved out of state due to a military PCS. So I didn't get any help from that dermatologist. I really haven't had any help in regards to my celiac diagnosis SINCE the diagnosis. I had no idea about the dairy issue. This saddens me. Routine bloodwork has shown normal results/levels with no obvious nutrient deficiencies. I'm not sure what else you need to know to possibly help out/give advice, but I really appreciate the reply. I am ready to feel better and will do just about anything to do so.

[mushroom]

Perhaps you can give us an idea of what continuing problems you have. Bloodwork or nutrient levels involves checking a lot of things not normally checked on routine blood exams - levels of Vit. D, B12, potassium, magnesium, iron/ferritin, folate, thyroid function. I am hoping by now your DH has cleared up at least. Some people with DH find it is very sensitive to iodine and they have to watch their iodine levels or it can flare again. What other symptoms are you having?

[blondie1985]

Perhaps you can give us an idea of what continuing problems you have. Bloodwork or nutrient levels involves checking a lot of things not normally checked on routine blood exams - levels of Vit. D, B12, potassium, magnesium, iron/ferritin, folate, thyroid function. I am hoping by now your DH has cleared up at least. Some people with DH find it is very sensitive to iodine and they have to watch their iodine levels or it can flare again. What other symptoms are you having?

I have periods of horrible bloating, almost always have gas after meals/food, constipation issues, sour stomach after meals at times ...

My DH has cleared up, and now it doesn't even show up when I am accidentally glutened. My only symptoms when I am glutened are GI related - severe bloating/stomach pains, etc. To clear the air, though, I am rarely glutened.

[mushroom]

If you are sure you have eliminated all trace glutens, from sauces, marinades, salad dressings, mayonnaise, etc, and from all personal care products, have replaced plastic and wooden utensils and cutting boards, got a new toaster and strainer/colander, the next question would be are you getting cross-contaminated at home? Is the rest of your famiy still eating gluten and are your taking sufficient care to prevent cross-contamination? You need separate shelves (upper) in pantry and fridge for gluten free things, no shared peanut butter or spread jars because of crumbs(label all your jars clearly), a gluten-free section of counter space. You need to go so far as having your partner brush his teeth before he kisses you even. Cross-contamination is a sneaky b*st*rd.

[inspired421]

What is DH?

[mushroom]

What is DH?

Dermatitis herpetiformis, the skin form of celiac disease.

[Michelle L]

The one thing I thought of when reading your post is that maybe you have other food intolerances/allergies...besides gluten.

I found out that I was allergic to a few other things besides gluten, so the reason why you may be feeling food some days / bad other days is that your body may be reacting to other foods you are eating.

Just a thought...if you can get additional allergy tests that would help..if not, maybe you could have a food journal and write down what you eat everyday and if you get any symptoms after you eat. Then you could take a look at it and maybe you will find some patterns, especially if you eat a lot of a certain food every day.

Hope this may help!

[rosetapper23]

Have you eliminated all soy? Soy, by the way, is in almost everything (especially mayonnaise, tuna, and salad dressings). Many products didn't used to contain soy (mainly soybean oil), but they've now added it. Take a look at the ingredients of the foods you tend to eat--believe me, you'll find lots of soy. Many of us celiacs can't tolerate soy, so perhaps this is the cause.