Do you think I have Celiac or Gluten sensitivity?

[Alkosh]

I’ve had something undiagnosed for about a year. I feel like I’ve known I had gluten issues, but didn’t want to go through the large symptoms of eating it significantly again to get tested, so chose to remove it from diet as much as possible. I then went down the rabbit hole of chasing other ailments, as most probably have here.

I had been assuming I just had a yeast infection, so was just mostly focusing on removing sugar and yeast from my diet which largely reduced my symptoms by 95%, which for some time has just been the odd muscle twitching, joint pain, gas and burning skin sensation – some days I could not have them at all.

Diet to date
My diet for past year I limited most forms of gluten (e.g. bread, pasta, biscuits), but was still having it in trace amounts crisps with ‘May contain gluten’ and gravy for dinners. I would also have pasta maybe once every two weeks and wheat flour covered (e.g. Fries). 

I’m 25 and have a BMI below normal, but have been falling short of the number of callories I should have in a day. I’ve now been having excess amount of calories and successfully putting on weight as I aim to get back in the healthy range. I didn’t really consider how underweight I was till I found out my BMI.

From this, I decided to start having pasta multiple days in a row (as good for calories) and have been getting some symptoms I’ve not had in a year. This seems to restarted up my reactions to it in extreme, now when having wheat covered fries for example, I have significant symptoms, where I haven't in a while, the reactions day by day have been getting worse or lasting longer. It started off initially as 2 hours after the meal with fatigue, then feels like sharp pain in my muscle, then nausea the following day, now today stomach cramps, now I feel a bit ill this morning. So it seems to have evolved each day and got worse again. If I just had a one off pasta meal a few months ago this wouldn’t of happened.

I guess what might of accentuated this even more I stopped gluten pretty significantly for 6 weeks as my parents were away so could look at my diet more. I wonder if this period stopping it has made it worse.

Has having it in trace amounts for a long time kept the symptoms fairly minimal? Even to the affect of having one pasta meal every now and then to know cause a large reaction?

How it started?

A year ago I had a fever, then my ailments started from there. I’m guessing it is mono or something had activated it. Though I had the blood test for celiac, I think because I had mostly abstained it from my diet, it potentially missed it. I didn’t really know much about gluten at the time either.

Test results (Attached image)

• Red cell count (with haemoglobin) - Lowered
• Lymphocytes – Lowered
• Alpha 1 Globulin - Lowered
• Gamma Gliadin 15-mer IgA and Gluteomorphin + Prodynorphin IgG both equivocal.
• HHV-6 and Epstein Barr

As said the lowered counts I’m not sure if they could be from malnutrition and then this has lowered my immunity to ‘re-activate’ the viruses – which are ones your body always has, but just keeps in-check.

At a later point I had ‘Wheat/Gluten Proteome Reactivity & Autoimmunity’ test with private, though I had it mostly abstained it from my diet, but it was there in small amounts as pointed out above, the ones shown above which came up as equivocal. So I probably wasn't having enough to get it positive.

Every other result is normal as can be: Minerals, Thyroid, Liver, Diabities etc.

What now?

I’m going to continue to eat gluten and book an appointment. I think it seems obvious I have a gluten issue as it has really shown its face again, even when I have small amounts. Though, whether it is celiac or gluten sensitivity I’m not sure if the clues above point out as my self inflicted malnutrition may of lowered those counts.

Be interested to get an opinion on this, thanks in advance.
 

 

[Jmg]

Hi and welcome

Wow, what a great opening post. You've clearly thought this through. 

On 3/15/2018 at 10:52 AM, Alkosh said:

guess what might of accentuated this even more I stopped gluten pretty significantly for 6 weeks as my parents were away so could look at my diet more. I wonder if this period stopping it has made it worse.

Has having it in trace amounts for a long time kept the symptoms fairly minimal? Even to the affect of having one pasta meal every now and then to know cause a large reaction?

Difficult to know for certain but many experience an increased response to gluten once removing and then reintroducing it. So yes, possibly!

On 3/15/2018 at 10:52 AM, Alkosh said:

I’m going to continue to eat gluten and book an appointment. I think it seems obvious I have a gluten issue as it has really shown its face again, even when I have small amounts. Though, whether it is celiac or gluten sensitivity I’m not sure if the clues above point out as my self inflicted malnutrition may of lowered those counts.

Be interested to get an opinion on this, thanks in advance.

Difficult to say. You don't mention what your symptoms are, but in themselves they wouldn't give much of a guide anyway. You need to get a full celiac panel done after a gluten challenge to either confirm or diagnose celiac. 

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Keep a food diary during the challenge. If you react to the gluten but test negative on a full panel you may be NCGS. But this is jumping ahead. First see your doctor, explain that you want a test and agree with him how long you'll be eating gluten daily prior to taking blood for a full panel.

Best of luck, hope you find your answers and good health at the end of the process!

matt