littleburgy

My blood test came up negative for celiac, but I'll be talking to the doctor later this month. I hated the gluten challenge so much I just don't want to chase a diagnosis anymore that may never come.

I generally haven't been itching and scratching as much as I was before. I'm in a bind because I'm staying with my in laws for easter this week. I enjoy visiting them in one respect but in other ways I find it stressful (and that doesn't help). They're also from Poland so their house is a ****ing BAKERY of baked stuff, and they struggle to understand life without potatoes and bread, nor do they understand the meaning of "I'm full, no more, thanks" but they're being as supportive as they can. However, it will be so much easier when I get home, where I can have an easier time not having to answer to anyone about what I can or can't eat. 

Thank you for your feedback! Did you get a test to find your food intolerances or did you do an elimination diet?

At the moment my diet is pretty strict -- no soy, no dairy, no grains whatsoever. I very clearly had a reaction when I started my gluten challenge and put dairy back in my diet in addition to the gluten, that much I know. My eczema basically exploded and my whole body felt bloated and swelled like a balloon. I'd like to take a break from grains for a few months to see how it goes before I try introducing things like corn, rice or potato.

I think what is frustrating with my little flare ups is that it's hard to tell what is food and what is stress or allergies (and I admit I'm not being very patient about them, and I'm probably just feeling testy in general because of the diet adjustments).

I have some gluten and food intolerance problems (no confirmed celiac diagnosis) and I have just finished the 2nd week of cutting out gluten, dairy and soy from my diet.

I have suffered from hypothyroidism and anemia off and on for some time now. But my most annoying autoimmune problem is eczema. I had it as a child, it went dormant in my teens and 20s but it came back after my mother died when I was 27. I have endured it for over 10 years now and I discovered off and on that it's clearly diet related.

In the last couple of weeks, my eczema has improved dramatically, but I still am getting little flare ups here and there that are really annoying. Maybe it's because the improvements really got my hopes up too quickly but I don't know what to expect as far as the healing process goes. Maybe I'm afraid it will never go away or it will come back, but I want it out of my life so badly right now. I realize I can't expect the quick fix that steroid creams bring (and they don't last or address the real problem anyway) but I was putting feelers out there to see what everyone else's experiences have been, and if your eczema more or less went away, how long did it take? 

Some days I feel amazing, but today I am really moody and just plain pissed off. I feel like I am going mad, I've developed this really bizarre obsession with food that I haven't seen since I lost weight a couple of years ago. I hope this is just temporary withdrawal from the truckloads of gluten I used to eat and can't anymore.

So I guess I needed to rant and to summarize --

How long did it take your eczema to heal if it did?

What food intolerance testing do you recommend? I will be discussing this with the GP later this month.

Thank you for your time.  

Thank you for your support, everyone. I will be seeing everyone around. If nothing else it's been a good thing that I've finally pinpointed what's been causing my problems for so long. There's no better test than seeing how you react to what you eat.

Did you get a complete panel? I tested negative on TTG which is really odd. If my doc had not ordered the complete panel, I never would have received a diagnosis. Anemia was my only symptom at the time.

I am officially diagnosed, but my husband was not. He went gluten-free per the advice of two medical doctors 14 years ago and is thriving (we knew nothing about celiac disease and testing back then). So, you might consider the diet, but stick with it for at least six months!

The GP did get some pretty thorough testing done but I will double check with her when I see her. She might order the additional biopsy but I won't be fussed if she doesn't.

If diagnostic methods do improve in the future, than someday perhaps I may be willing to put myself up to more testing.

I have started the Specific Carbohydrate Diet (more or less, no dairy, gluten or soy) and I can't believe how much better I feel. Unless I want to live with eczema, anemia and constipation -- eating gluten and dairy just isn't an option. I've cut out soy as well because it's not recommended for hypothyroids like me. I've tried gluten free but with dairy and soy -- some improvements but not as much as taking them all out!

Right now the upcoming challenge is going to be travelling to see my in-laws for easter and explaining to them that I have to eat a strict diet. I think they understand in theory and are willing to help but it will be getting them to understand little things like hidden gluten -- yes, "the meat is great but I can't eat it breaded!"

So my blood work came back negative for celiac. But I was positive for anemia and the GP wants to talk to me next month when I get back from vacation. She might request a biopsy, but I doubt it. And even then I may not get a positive on that.

I've reached a point where I don't want to keep chasing a diagnosis that may never come and possibly isn't there. When would enough be enough? Do I start chasing doctors and getting second or third opinions and demanding this test or that test and keep eating gluten and stay sick and miserable?

Sorry, I can't do it and I'm done with it. Maybe it's not celiac's and it's a gluten sensitivity.

All I know is what wrecks me when I eat gluten (and secondary, dairy.) So that's where I'm at, I'll be on the boards discussing the gluten free life anyway. I have been off gluten for a week and already feel like a new person. My head to toe eczema has almost disappeared. The wounds that have taken months to heal are finally starting to heal. The gas and brick stools are subsiding. I'm up managing the house and cooking and cleaning like a wife again when I used to want to just go to bed. I just want my life back.

So...I just had my blood tests this morning. What should I expect next? Can I go back off gluten? I will find out if anything is positive next week.

If it is positive will I have to keep eating the gluten for more testing?

If it's negative do I just throw my hands up in the air and just go gluten free anyway? (Keep in mind I'm in the UK on the NHS so asking for more testing isn't easy, and may not be conclusive either way.)

I'm doing better today. It may be just getting used to the way I was before. I felt so wonderful the 2 weeks I was off gluten it was like: WOW! And suddenly.... UGH! NO!!!

Unfortunately I'm on the NHS in England and the GP may still want the blood test first before requesting any other testing. It wouldn't hurt me to ask, but they're a bit bureaucratic and step by step about diagnosis and spending money on it.

A lot of my symptoms are eczema related and last night I was flaring up very badly and was so uncomfortable. And I also was so bloated I looked like I was pregnant, and my face was bloating as well. My husband used the term "horror movie" to describe how fast I changed once I went on the gluten and I got kind of mad.  He didn't mean to upset me but I guess it reminded him of people that change from normal to abnormal quickly. Ha ha. He suggested I contact the doctor if I still have trouble coping. Some abdominal TMI issues as well but I'm coping.

Mostly right now (after having boundless energy before) I just want to sleep.

Is there a possibility I could cut this challenge shorter? I had been off gluten about 2 weeks. Prior to this I was eating it all the time. For example maybe just get the levels back up for a couple of weeks and then get a test?

So I'm now on day 3 of my challenge and if I ever doubted I had a problem with gluten, I am not now.

I was only off the gluten for about 2 weeks and I'm a little surprised at how uncomfortable and crummy I feel. As I understand it, the longer you are off the gluten, the worse it is to go back on. 

I am having a hard time with this today. Do the symptoms ease up at all? Is this just body shock from getting the gluten back? 

I'm on the challenge right now. I'm pretty sure the consensus is it's about length of time that gluten is in the diet and how much is eaten can't shorten it. Some people like to load up on the gluten as a "send off" but that can cause problems for others.

I've discovered very recently that my laundry detergent was also aggrivating my skin, so just as I was starting to doubt I really had a gluten issue and went back on gluten for the challenge (because the doctor requested the test), my digestive system is letting me know loud and clear that it STILL doesn't like gluten after going back on it.

As I see it, if you suspect you have celiac disease, it should be looked into even if you have other health issues. Like other said, many autoimmune issues end up occuring together. Your stool issue sounds like constipation. Passing stool should not be strained or involve cuts or bleeding. I've had a history of something similar -- constipation and rock hard stools with occasional blood or hemmorhoids. Plus blood in the stool can also be from internal hemmorrhoids, common with constipation.

Thank you for the info! Your skepticism and frustration with doctors is understandable. From personal experience of losing my mom because of a doctor's negligence -- with some exceptions, I still have a hard time trusting them in general. I'm going to continue forward because the doctor will be testing other things and is willing to look into helping me determine possible food allergies as well. There are some I already suspect I've developed an intolerance towards (dairy in particular) but if there's other certain foods I need to know about, that will help.

I think for the next few weeks I will use the time to get used to a new diet -- cutting way down on sugar, no more dairy or soy, and eliminating processed food in general. The only difference is that I'll add some gluten items and just take them out after testing. It's frustrating to have to go back on the gluten for a bit because I was doing so much better without it -- but I will try to use it as a time to keep learning and phase into a new way of eating.

60% of celiacs with dh test negative on the blood panel & also have a low rate of positives on the endoscopic biopsies. DH has to be dx'd with a biopsy of clear skin adjacent to an active lesion. AND you still have to do the gluten challenge otherwise you will have a false negative.

 

Where did you get these statistics? If that's the case, it sounds like my challenge and upcoming blood test will just be a waste of time, then. I'd probably have to get a separate referral to the dermatologist and do a separate challenge. 

Everything I'm hearing about false negatives and sketchy biopsies makes me wonder if I should even bother...though I may have to get the blood test before they run other tests anyway. I will try to get in touch with the doctor to voice my concerns. Right now I just don't have a good feeling about this whole process.

I haven't had a formal diagnosis of DH, sorry if I have not made that clear -- I've modified my previous post -- it's something that I suspect. I've had these ulcer-like sores, they're raised like warts or blisters, that fit all the descriptions of DH but I have not had it biopsied. I may get a referral and discuss my options with the nearby dermatologist as well, he's one of the top derms in the UK so I do trust him. I've had these for quite some time now, it's something I've had to live with and travel with -- and the sores heal so slowly and it's a very stubborn skin problem that acts and responds differently than my standard eczema. These sores have developed in the last 2 years or so and I haven't spoken to the dermatologist in a while about them specifically. Lately I've only been seeing the GPs and I just get told "stay moisturized blah blah blah"

I guess what I mean to say is that I suspect the DH as part of a number of possible celiac symptoms I have concerns about (eczema, thyroid, anemia, constipation), which is why I'm taking the first steps in getting tested.

Sometimes I second guess myself and I wonder if it's worth going through it but I guess I'd rather just get it over with and then I can move on. In the end, the way our body responds to what we eat gives us the ultimate answers. What I have figured out is that it's food related, that's all I know. Dr. and I agreed that if it's celiacs, I need to know. I guess a formal diagnosis would be good for the future when I have family and friends that may not understand. To be able to have concrete justification as to why I can't eat the things others do would be helpful (particularly my in-laws who try to push food on us constantly, gluten or not!) 

Well, I have no desire to gorge myself on gluten and carbs. For me it's like alcohol. I used to love to drink, and when I was younger, I would drink a lot. Now I rarely drink at all because I hate the way alcohol makes me feel the next day and I just don't have the same tolerance anymore. When eating certain foods make me start to feel like crap, I lose the craving for them and the appeal goes away.

That said, I will try to enjoy certain things in moderation. Enough to include it in my diet but not so much that I will feel like crap. We will be in Spain for a week so it will be nice to not have to stress about eating gluten free then. All of this is fairly new to me.

I'm still not entirely sure if it's full blown celiac's but the doctor and I both agreed that we need to be sure it's not just gluten sensitivity and food intolerance. The biggest red flag for me is the possibility of DH, that's why I'm going through the testing.

If the tests are negative I'm not going to worry about it. Given that I'm hypothyroid I'm apparently not supposed to be eating gluten anyway so I look forward to stepping towards true wellness in about 6 weeks!

I hadn't been gluten free save for almost the last 2 weeks...does this help at all? Is this one of those things where it builds up and goes down gradually?
 

I'm a gluten noob

I spoke to the doctor this morning and I will be undergoing the gluten challenge and taking a blood test in about 6 weeks from next week (I want to enjoy one more weekend of feeling great...)

First of all, where are some good resources on how much gluten to take daily for the challenge?

I'm new to understanding gluten sensitivity -- do you experience more symptoms the more gluten you eat -- and do they lessen if you take less gluten? Or is it across the boards -- you experience the same severity of symptoms no matter how much you eat?

Thank you for your help!

The other issue is that I suspect I might also be developing issues with dairy. At first I thought "But I've never had lactose intolerance!" but then I just read that dairy intolerance can also develop over time with the celiac disease.

I'm going strictly diary free this week to see how I feel.

I'm in the UK on NHS so I'll probably have a while before I get any blood testing... and it will be a separate appointment in a few weeks anyway. I recall in the US I could get blood tests for thyroid right there but here I've had to do that separately, so I expect it would be the same.

At the very least I have a doctor that I trust will listen to my concerns. The more I'm reading the more it feels like some puzzle pieces might be fitting together. I may be in for a journey but even just solving a mystery would make me feel better.

I'm new to this forum. I've decided to register here because I have realized over the weekend that I might have Celiac disease and I'm going to be talking to a doctor next week. Personally, I find it a shock to even type it out. At the very least, if it isn't celiac's, something is going on with what I am eating. At the very least, I believe it involves gluten. 

One of my brothers' in-laws had it, and I was always under the impression that it was just something extremely rare. I had my own health issues but mine didn't quite match hers, and she's not a blood relative, so I just figured I was in my own boat. I just needed to figure out what boat I was in. Truth be told I actually didn't know a lot about the disease.

For much of my life, I had hypothyroidism. I also had eczema. As I grew older I was also diagnosed with depression and an anxiety disorder. My eczema did subside when I was in my late teens and 20s. But then after my mother died in my late 20s, a few months later the eczema returned. I'm not sure if stress triggered something, or if it was just part of the aging process.

Off and on these past 10 years, a few times I tried candida diets. These involved strict diets with no grains whatsoever, and whatever I went through them, my eczema disappeared. But I often abandoned these diets because they were expensive and I was going through grad school or in transition between work.

In the past few years, the last 2 in particular, I've had skin problems head to toe. Standard atopic dermatitis, but also "chicken skin" on my arms (had this as a child as well) -- but most irritating: a third kind of skin problem that seemed different than my usual eczema, it was these ulcer-like spots all over my butt, elbows, knees, calfs and ankles. These wounds healed very slowly and often would get infected. This I believe may be DH but I have no formal diagnosis of it yet.

I also have been diagnosed with anemia in the past and issues with rock solid stools and hemorrhoids. 

Last week after just feeling awful I tried the "strict" diet again. I didn't believe it was candida, but something is going on. I wasn't necessarily trying to see if it is celiacs, but even just seeing if it's allregies. After a week of cutting out the gluten, my eczema has cleared up for the most part, the clearest it's been in 10 years. There's a few patches left but it's still a vast improvement.

What's more, in the past year or so I've also experienced some erosion on my teeth, which is completely unheard of with me, all my life I had very strong, healthy teeth -- running in my dad's side of the family.

I guess yesterday just thinking about everything it dawned on me that I might have Celiac's I'll have to check this out.

So that leaves me here. I do realize that in order to get tested, I'll have to return to gluten for a few weeks. I look forward to learning more. Hopefully I will find out what's going on.