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To test or not

Snuffthroostr
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Snuffthroostr Newbie
Snuffthroostr
Posted

Hi! I'm going to jump right in.  I apologize if there is tmi!

I am middle aged. I have had stomach issues for decades. I was diagnosed with IBS decades ago. I decided that it was just normal for me to not "go" but once a week, that is unless I was working! Then I could go 6 times before going to work!  Eventually it got to the point that I was going in the middle of dinner.  And most of the time I would just cramp for 30 minutes then eventually "flood" the toilet.

 

My son suggested going gluten free. Easier said than done. Eventually I managed to not eat it. No more cramping, excessive diarrhea,  and a rash on my back (30 years of rash) disappeared. My vertigo has vanished and no more brain fog! I still have a stomach ulcer, b12 deficiency and anemia. I also am apparently lactose intolerant,  sometimes. Blue cheese kills me and I usually blame cross contamination if I get crampy. 

 

I have read about the testing.  It sounds like torture. Is it worth getting tested? I am so afraid of 6 weeks of hell.

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Ennis-TX Grand Master
Ennis-TX
Posted

Well you definite sound like many with celiac. I used to have constipation issues also....this is magnesium deficiency in many. I now get a rotating dance of D and C and my body does what ever if I get glutened. The testing would help set you straight and give you a excuse to stick to the diet 100% strict and even take the whole house gluten free. It would rule out any other issues also. It is 8-12 weeks of eating gluten daily, some get buy using say a tsp or two of vital wheat gluten at night before bed and trying to sleep it off.
Open Original Shared Link

B-vitamins, Try Liquid Health Energy & Stress and Neurological Support 1tbsp each 3 times a day. It is liquid so just mix it with juice or tea and no pills. You can get them on vitacost or amazon.
Iron, take a easy vitamin C like Ester-C with your meals and eat more red meat, Growing Naturals Pea Protein (40%DV a serving) or some other source high in Iron
Magnesium, do look up the deficiency issues with it if you still present the Doctors Best powder would be best if your having D and Natural Vitality Calm if you have C and dose to tolerance.

You might be lucky with one thing, if that rash was DH then you HAVE celiac. Do read up, I think the testing for it might be easier. Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

Hi,

Whether or not to get tested is a good question.  The standard gluten challenge is 12 weeks of eating gluten for the blood antibody tests, and 2 weeks for the endoscopy.  People with DH tend to not show up on the usual testing sometimes, so they do a skin biopsy instead.  DH is an itchy rash that is usually symmetrical in nature.  Both elbows, both knees, etc.

The treatment for DH is the same as for celiac disease, the gluten-free diet.  However some people with DH take dapsone on a temporary basis to get past the worst of the symptoms.  Dapsone has some negative side-affects though.

If eating gluten-free makes you feel better, that is generally a good reason to do it.

PK-432 Explorer
PK-432
Posted

Before you go on gluten challenge it's better to go on celiac disease genes test; HLA TYPING CLASS II. It will help you to rule out either you have celiac disease /   dermatitis herptiformis  /gluten sensitivity because they are many people who get better on gluten free diet with IBS. so look all aspects and then decide.  Best of luck.  

Bree J Apprentice
Bree J
Posted

I'm kind of in your boat, avoiding gluten makes me feel way better, but idk if I want to get tested. I probably won't because I will not be able to function if I do a gluten challenge. I will just train myself to have the willpower to eat like a celiac. 

ravenwoodglass Mentor
ravenwoodglass
Posted
14 hours ago, PK-432 said:

Before you go on gluten challenge it's better to go on celiac disease genes test; HLA TYPING CLASS II. It will help you to rule out either you have celiac disease /   dermatitis herptiformis  /gluten sensitivity because they are many people who get better on gluten free diet with IBS. so look all aspects and then decide.  Best of luck.  

Getting a diagnosis is important but you can't rely on the gene tests to tell you for sure since more celiac associated genes are there other than the two for which they test.  I am an example of someone without one of the two most common genes. I am very thankful I was diagnosed before they started doing gene testing. If not I would be dead without a doubt. After I was diagnosed my children were tested and both were a low positive on testing. A few years later one child decided to get her genes tested and was told her diagnosis was a false positive (despite symptom relief on the diet). That prompted me to test my genes and it was discovered I am a double DQ9 which had at that time recently been recognized as a celiac associated gene. Long story short, don't take gene testing as a for sure way of telling you whether you are celiac or not. We still have a lot to learn about celiac and the genes associated with it.  If you are gluten free and saw resolution of your problems at present the best way to a formal diagnosis is a challenge and blood testing and endo. If your reaction to the challenge brings all your symptoms back sometimes a doctor can prescribe a drug that will make the challenge tolerable or you can simply realize that your body is telling you what it needs and stay strictly gluten free.

Snuffthroostr Newbie
Snuffthroostr
Posted
  • Author

Thank you all for your very thoughtful replies! I will (hopefully) be getting insurance soon and can discuss it with a doctor. As forgenetic testing, I did have my genes tested for everything through a program called "Gene's for good". It did show one marker, unsure which, which said I had a slight increase in chance for celiac, as well as other markers for a possible general auto immune issue. There were no specifics given, nor an exact  translation, just broad generalizations. (My sister has Stills disease, which is similar to lupus)

Anyway, thanks again!

Oh, looking at the pics of celiac rash, I don't believe that's  what the rash was. It was more like a 30 year heat rash(?). But it goes away without gluten, comes back with.

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frieze Community Regular
frieze
Posted
On 7/1/2018 at 2:25 PM, PK-432 said:

Before you go on gluten challenge it's better to go on celiac disease genes test; HLA TYPING CLASS II. It will help you to rule out either you have celiac disease /   dermatitis herptiformis  /gluten sensitivity because they are many people who get better on gluten free diet with IBS. so look all aspects and then decide.  Best of luck.  

the gene test is NOT a slam dunk, don't have celiac if test is negative.

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