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Should I Bother Getting Tested?

GlutenCanKissMyButt

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GlutenCanKissMyButt Newbie
GlutenCanKissMyButt
Posted

Hi everyone! I'm new here. My name is Katie and I'm about 99% sure I have Celiac Disease. All year I have been doing elimination diets on and off to try to figure out what is causing all of my symptoms and health problems and I just keep coming back to GLUTEN. Every time I eat it I almost always get diarrhea, gas, bloating, and abdominal pain AND eating it makes some of my other problems worse. I'll list my health issues so maybe you guys can tell me whether you think they are Celiac related?. Here goes...

Fibromyalgia like symptoms (chronic pain, fatigue and horrible brain fog. The pain and fatigue get way worse when eating gluten, the brain fog is pretty constant)

PCOS, irregular periods, abnormally heavy periods (all seem to be worse when eating gluten).

Pre-Diabetes

dry skin and hair, hair loss off and on

itchy eyes and scalp

asthma and allergies, sometimes severe and they both seem to get better while gluten free

depression

and more recently a skin rash with little blisters on one of my fingers that itches like crazy and could be DH but I really don't know. Right now it is gone but I just recently started eating gluten again for the last 3 days so it may be coming back soon.

Other symptoms I get only when eating gluten are cold sores and chapped lips, and excessive thirst (could just be from higher blood sugars).

I have not been to a doctor because I haven't had health insurance for over a year but I just got approved for insurance to start Oct 1st and knowing that I wanted to be tested for Celiac I stupidly decided that I will eat gluten for the next month+ so I can get accurate blood tests. Well, I am on day 3 now of eating gluten and I just feel miserable. I am bloated, in horrible hip and back pain, sneezing constantly and my lips are already really chapped. I feel fatigued and achy like I have a cold... I am really questioning whether I can do this for a whole month longer and if it's worth it.

Regardless of the results I am going to eat gluten free because I know gluten does horrible things to me, celiac or not. The main reason for really wanting the diagnosis is to show my husband that I'm not crazy and we really do need to be careful with wheat stuff in the house because he thinks I'm a hypochondriac (sp?) and for my other family memebers who ALL suffer from autoimmune diseases and won't believe that gluten could be the problem behind the disease. If I tested positive it would make them all think a little more about what they are doing to themselves.I also have 2 year old twins and I want to know for them if they are also at risk. I basically want to be the guinea pig for my family :).

I just don't know if I can deal with the suffering for a whole month when I could be healing. And, I know that celiac testing is not 100% reliable so I don't want to waste my time. I know there's genetic testign but that still would tell me very little and would not be covered by insurance anyway. I'm just confused. Is knowing for sure if I have Celiac going to help my future doctors figure out why I have these other problems and change how I am treated? I am leaning towards going back to gluten free and sticking to it forever because I don't know exactly what I will gain going through all this other than an official diagnosis that I can tell family about. Oh, I'm probably deficient in lots of nutrients too. Maybe my doctor will take my word for it and just test those without needing Celiac tests.

Ugh, sorry this is so long. I'm just very confilcted at the moment. If I left anything important out just ask...that's just the brain fog at work.

TIA!

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hazelbrown10 Rookie
hazelbrown10
Posted

If I were you, I'd get tested, even though the weeks on gluten beforehand will not be fun. Even if you will go gluten-free after testing no matter the result, I totally get why you want a diagnosis. My friends seem to be humoring my avoidance of gluten, but I can tell they think I'm just overreacting. As do the doctors... sigh. With a diagnosis people will certainly have to take you seriously! :) Just make sure you ask for ALL the tests or you'll have less of a chance of a positive result.

Looking for answers Contributor
Looking for answers
Posted

"Regardless of the results I am going to eat gluten free because I know gluten does horrible things to me, celiac or not. The main reason for really wanting the diagnosis is to show my husband that I'm not crazy and we really do need to be careful with wheat stuff in the house because he thinks I'm a hypochondriac (sp?) and for my other family memebers who ALL suffer from autoimmune diseases and won't believe that gluten could be the problem behind the disease. If I tested positive it would make them all think a little more about what they are doing to themselves.I also have 2 year old twins and I want to know for them if they are also at risk. I basically want to be the guinea pig for my family"

There's plenty of research to show the correlation without you having to put your health in jeopardy. If you will remain gluten-free regardless of results, then why put yourself through this? What if the biospy comes back negative, then you'll have to educate your husband anyways. I just don't think you're going to get the clarification you need from this, as the tests are just not that accurate. Just my two cent's. Can't stand the thought of you in so much pain. :(

Skylark Collaborator
Skylark
Posted

I was in your situation. I chose to skip the testing, as I didn't want to lose a month or more of my life. I have not had any issues with doctors not taking me seriously. I'm currently up to three different doctors who have told me that it's not worth a gluten challenge and celiac testing because I'm willing to eat gluten-free and feel so much better off of it. They have no problems checking nutritional status, treating my thyroid disease, or making sure I have enough bone density.

GlutenCanKissMyButt Newbie
GlutenCanKissMyButt
Posted
  • Author

With a diagnosis people will certainly have to take you seriously! :)

That's exactly what I want is for my doctors to take me seriously because I have had horrible past experiences with doctors and I don't have much faith that I'm going to get a good one this time either. And, I really wish my family members who are also suffering would take going gluten free serioulsy. There is plenty of information out there but nobody seems to care unless it comes from a doctor.

There's plenty of research to show the correlation without you having to put your health in jeopardy. If you will remain gluten-free regardless of results, then why put yourself through this? What if the biospy comes back negative, then you'll have to educate your husband anyways. I just don't think you're going to get the clarification you need from this, as the tests are just not that accurate. Just my two cent's. Can't stand the thought of you in so much pain. :(

That is a very real possibility. I think if the testing for Celiac was more accurate then there is no doubt I would stick with eating gluten to get the diagnosis but right now I'm thinking I just can't do it and I will tell my future doc there's no way I can put myself through this for SO LONG just to confirm something I already know. I'll have to try to find a doctor who just believes me!

I was in your situation. I chose to skip the testing, as I didn't want to lose a month or more of my life. I have not had any issues with doctors not taking me seriously. I'm currently up to three different doctors who have told me that it's not worth a gluten challenge and celiac testing because I'm willing to eat gluten-free and feel so much better off of it. They have no problems checking nutritional status, treating my thyroid disease, or making sure I have enough bone density.

Thank you for saying that! My thinking was that in the grand scheme of things one month is worth it to get these tests and then I have the rest of my life to recover. But, ya know? I still don't want to go through even a month that I could spend recovering and feeling better.

Thanks for the replies everyone!. Today I woke up in tons of hip and bone pain, worse than usual and the rash on my finger seems to be blistering up again a little bit which means there is a very real possibility that it's DH so I am just not messing around anymore. I am going to get everything in my house straight (we are all almost gluten free anyway) and concentrate on menu planning for the first week to get off gluten and then I am going cold turkey in the next day or two. I've done this before and I experience horrible wheat cravings. It truly is addictive so I really do have to set myself up for it every time I break the habit again and it takes about a week to get through it from my experience. How silly, right? I can't believe I thought I could do this to myself.

Skylark Collaborator
Skylark
Posted

You can have a skin biopsy right next to a DH rash for a firm diagnosis. I don't know how well it would work on a finger though.

Good luck with the gluten-free. I hope it helps everything.

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    • Scott Adams
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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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