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Official Diagnosis? Family Considerations

rdunbar

By rdunbar
in Coping with Celiac Disease

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rdunbar Explorer
rdunbar
Posted

so I finally went to see a doctor, to get my vitamin levels checked and thyroid, ect... after not seeing one for quite a while. I had tried accupuncture/chinese medicine, homeopathy,a dermotologist, and had gotten no results for my many symptoms, including the torturous rash on my scalp, which now I know is dermatitas herpetiformis.

Firmly, and happily commited (finally!)to the gluten free diet and lifestyle now for 9 months, I am 100% sure that I have celiac, and that the rash, which now is ever so slowly abating in it's itchiness, is DH, so I have no pressing reason to have someone in a white coat make some 'official' declaration. And, I wouldnt do a gluten challenge if you held a gun to my head for obvious reasons. ( I keel over in pain, and dizziness, and can barely walk when I breath gluten in the air; this happened to me when I was foolishly doing catering jobs, and happened to walk into a cloud of gluten from someone slicing a huge pile of bread up for a party! don't let me neglect to mention that I became insanely irritable and basically was in a state of rage.all this happened in a matter of a minute or two!!)

The only reason I can think of to have a real diagnosis is that certain members of my family just don't take it that seriously, which is unfortunate. I know they would view it differently if a doctor said it, as there are a lot of nurses in my family, and I feel like they have way to much faith in the medical field.(LOL) I've struggled so hard with this issue, like many of us have. It sucks to not only be getting no support, but to be disrespected where you are looking for a boost.On the bright side, It makes me value and appreciate all the help and support thats here on this board! We all know how tough it can be to learn everything you have to do,and adjust to living this way. I just want them to understand what I've been going through, and I admit, I have'nt been the best at explaining it, as I get so flustered around this topic, it's a real sore spot for me.

The doctor I went to was recommended to me because his wife is celiac, and knows whats up. The visit went great, and I was really comfortable with him. I told him about my history with most of my symptoms ( so many, I'm sure I left some out), and the DH, though better, is still visable enough to speak for itself, so he had no doubts or reservations about my self-diagnosis.

What i'm wondering is, is it possible to get an official diagnosis from a doctor just based on a positive response to the gluten free diet? blood tests and biopsies are obv useless at this point, so I'm just wondering if this ever happens.

It's not really that important, but it would be nice to have my family take it seriously for a change, not just for me, but for them as well. I've also told them that this is genetic, so they should get tested, which of course is poo-pooed. i'm concerned that they have gluten problems as I can recognize many things about them that point to this, anxiety attacks, joint pain, ect... not as full blown as me, but still enough to be concerned about.

to me,It seems like the ultimate test would be to see if someone is willing to stay 100% STRICTLY gluten and CC free for any significant amount of time. No one in thier right mind would do this, unless they were getting huge relief; you have to make so many sacrifices, put up with so many inconvieniences, and have your social life disrupted, that no one would actually be doing this to just be trendy or cool, I'm sorry.

I was talking to someone recently who told me she had been gluten free for 6 weeks, while she was drinking a beer!! do you think that maybe she was cheating??

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Dixiebell Contributor
Dixiebell
Posted

It is good to hear that you are getting better gluten-free. I have heard that if you have DH, you have celiac. Did your Dr. say you have DH?

rdunbar Explorer
rdunbar
Posted
  • Author

It is good to hear that you are getting better gluten-free. I have heard that if you have DH, you have celiac. Did your Dr. say you have DH?

Thanks, he sure didn't seem to doubt it. What he said is that if your feeling better on the diet, and it's working, stick with it. only you know how you feel. I really appreciated hearing this comng from a doctor, after hearing about do many horror stories.

I asked him about skin biopsies, and he seemed to think it would be unnessessary

It not only feels way better, there are just fewer, and less inflammed blisters judging from the photos I take occasionally with my phone. I can't see it in the mirror too well.

Kay DH Apprentice
Kay DH
Posted

Regarding your "gluten free" associate. There are a number of gluten free beers out there, and they are pretty good. However, if the person was drinking regular beer then they were chugging gluten. When my symptoms started a year ago I was proactive and got the celiac panel blood test (negative after 2 months gluten-free) and the colonoscopy/endoscopy. Doctor thought I had diverticulitis because I wasn't sick enough for celiac. He also dismissed my genetic test (HLA-DQ8). Diverticulitis and celiac were negative, but I was only sick on the gluten challenge for a week and he only took 1 duodenum biopsy sample. Doctors are a disappointment, or as a doctor friend of mine said "celiac seems to run in families." She said they only studied it for a couple of minutes in medical school. My diagnosis consists of my GP saying to avoid gluten. My sister and niece are having gluten problems, but they are going gluten lite instead of gluten-free. You really have no control over what your family does for their health, so it is best to focus on what is best for you. Granted, it can be very frustrating dealing with family, but through time perhaps they will come around. My husband is very supportive of me, but it has taken some time for the reality to hit for him, too (smelly bathrooms are good reality checks). ;)

VioletBlue Contributor
VioletBlue
Posted

This could just be my family, but having a diagnosis made no difference. I had positive blood work, my medial history read like a who's who of Celiac symptoms and to top it off I have a double copy of a GI gene. My sisters reply when I told her about the double copy "I can't imagine where you could have gotten that from."

So having a diagnosis will not always convince someone.

srall Contributor
srall
Posted

As for the beer swilling celiac: 6 weeks into this I was still so damn clueless about what had gluten. I got extremely sick from a clam chowder I ate because I didn't know it was made with a roux. (sp?) However, that beer would have made me pretty sick. In fact I'd been getting so sick from beer over the last decade I'd already dropped it not knowing I was having gluten "issues"

Speaking of gluten "issues" I believe yours is an age old one. To diagnose or not? My husband (who is relatively on board with this) has seen my rage, depression, rashes, lethargy, experienced with me the pain and heartbreak of secondary infertility, anxiety, clumsiness, chronic D and C and has seem most of these issues clear up after going gluten free and he'll still make comments to others like "Oh yeah...my wife and her special diet." You can almost hear the eye roll, can't you? My SIL who I adore is an MD (allergist) and was one of the first to mention celiac to me, and this weekend while visiting her in Dallas she expressed surprise that even taking a communion wafer could make me sick for days. My brother has the same issues as I do and since he had a negative blood test for celiac, had his doctor tell him..."Oh, you don't have celiacs. You don't have to stop eating gluten," I don't trust the U.S. doctors' knowledge of this disease I just don't even know if an official diagnosis would change anything.

I'm with you about the gluten challenge too. I'm not sure I'd survive it. I guess since I don't get any food rebates, and since I'm an adult who can cook her own food, I have made my peace with this. Well, mostly. I still get annoyed with others' attitudes (and eye rolls). This site is a gift from God. The wonderful people who post here make me realize I haven't been crazy for the last decade. These symptoms are real. The advice is practical and supportive. If somebody is annoyed or insulted that I don't eat something at a party, that's a far less evil than the fallout that will last for 3 days at a minimum if I worry about making them feel better by eating their food.

rdunbar Explorer
rdunbar
Posted
  • Author

As for the beer swilling celiac: 6 weeks into this I was still so damn clueless about what had gluten.

I told her that beer has gluten, "oh, really?" was the response. I told her about the forum, so let's hope she shows up here!

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