Blood Tests, Enterolab, Iga Deficient...

[sf990]

Hi everyone,

 

So the past year I have been experiencing some major inflammatory symptoms (particularly lymph nodes around my neck, skin problems, etc.) and some major issues with sinuses/allergies that I hadn't had before. This, along with other conditions that I've struggled with for a long time, such as severe ADD, migraine headaches, and the list goes on. The only GI complaint I've really had was just inconsistency in my bowels, and bloating. Nothing too over the top that I ever thought was concerning.

 

I decided to try this Enterolab test, and it turned out that (if valid) I have a lot more sensitivities than I had every imagined.... My results were as shown:

 

 

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Fecal Anti-gliadin IgA      72 Units   (Normal Range is less than 10 Units)

Fecal Anti-Oat IgA      37 Units   (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA      14 Units   (Normal Range is less than 10 Units)
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA      6 Units   (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods      39 Units   (Normal Range is less than 10 Units)

 

 

Food to which there was no significant immunological reactivity: None

Food to which there was some immunological reactivity (1+): Rice, Almond, White Potatoe

Food to which there was moderate immunological reactivity (2+): Corn, Walnut, Cashew, Soy, Garbonzo Bean, Sesame Seed

Food to which there was significant and/or the most immunological reactivity (3+): Egg, Milk 

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So, this obviously was confusing to me and raised some concern. I had my mother take the same test, and she tested normal for everything, except slight gluten sensitivity. I then decided to take the gene test:

 

 

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HLA-DQB1 Molecular analysis, Allele 1      0201   

HLA-DQB1 Molecular analysis, Allele 2      0301   

Serologic equivalent: HLA-DQ   2,3  (Subtype 2,7)

 

Interpretation of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the genes that predisposes to gluten sensitivity and celiac disease, in your case HLA-DQB1*0201. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity, in your case HLA-DQB1*0301. Having one celiac gene and one gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene.

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With all of that, I decided to go gluten free on my own, and to try my best to eliminate the other foods listed for the time being. Ironically enough my lymph nodes have subsided more than 50% since then. 2 months into being gluten free, my doctor thought it wouldn't hurt to take a blood test.  I tested NEGATIVE,  but I know that since I was gluten free for 2 months maybe it was scewed. However I noticed that I was slightly deficient in IgA (note: I also tested negative for the IgG reaction)

 

Immunoglobulin A, Qn, Serum - 70 - LOW 

Reference interval: 91-414

 

 

I took all of this to a GI doctor and he basically dismissed my case and said it's very unlikely that I have celiac disease. He said I could do a gluten challenge if I really wanted to, but I am sort of afraid of going back down that route right now....

 

I just wanted to see if anyone has every been in a similar situation, and what steps they took next? 

 

Also, is it common to see so many food sensitivities?? I know Enterolab has shakey credibility, but the fact that my mom tested negative for everything makes me think that there has to be a reason I showed so much reactivity?

 

 

Any insight would be appreciated, as it's been a frustrating thing to try and figure out  

 

[Gemini]

The stool panels Enterolab offers are meaningless. Allergy/intolerance testing is difficult enough but stool testing for these conditions is not recognized by most in the medical field, with reason.  However, genetics is a different story.  Gene testing has come a long way and that is a valid test to see if you carry the genetics for a predisposition for Celiac and you do.  It does not mean you have Celiac but you carry the genetics to trigger for it with a DQ2 gene.

 

At this point, if you do not want to do a gluten challenge, then continue with the gluten free diet and see what happens.  Blood testing, if you are IgA difficient, will not work so a biopsy after a gluten challenge is the only route to go if you are looking for a definitive diagnosis.

 

Other food sensitivites are common when suffering from undiagnosed Celiac.  Your body is inflammed and eating any food can cause distress because your gut is all messed up. So, it may throw off other testing and you may not have all those sensitivities after all....just an inflammed gut that is reacting to many things.  It may help to keep a food journal and write all your symptoms down, so as you continue with the gluten-free diet, you can note changes or improvements that may occur with healing. I'm sorry I can't offer much more for a definitive diagnosis but it might not matter.  All that matters is that you feel better and if your symptoms resolve on the gluten-free diet, then you have your answer.

 

GI docs are dopes.  I never got an help from them myself, in fact, they kept me sicker for years by telling me there was nothing wrong with me.  I had to get very sick and very skinny before I figured it out and got tested.  I don't want to see that happen to anyone else.

 

 

 

 

[BlessedMommy]

It's really your decision. The only way to get a DX is to go through a gluten challenge. Many people can find these doable, depending on their symptoms and how long they've been gluten free.

 

I tried to and had to stop a few days into it, due to extremely severe symptoms. It would be interesting to know if I truly have celiac, but unfortunately for me the biggest risk of doing that is a stroke, so it's not an option for me at this time. I'm thankful, though, that nobody needs a doctor's permission to stay gluten free. I went gluten free 5 years ago. I'm 32 now and my health is good--probably the best it's been since I was in high school! I know that gluten free keeps me healthy and a functioning member of society, so that's all that really matters to me.

 

Best of luck in whatever you decide.

[janpell]

That is the same with me enlarged lymph nodes, poor skin (crazy skin actually, uncomfortable, itchy and painful at times) - I also have psoriasis, psoriatic arthritis, yellowing skin, chronic UTI's etc. I went gluten free three years ago without it being recommended by my GP and Rheumatologist. I did it because I decided to take the natural route to heal my body - it had nothing to do with Celiac as I knew nothing about it at the time so I was pretty overwhelmed when I jumped in. It seemed way too farfetched but my medications weren't working, I didn't want to do biologics but I could barely walk so I opened up to try another route and it worked, I mean, it really worked!

I also stay away from dairy, soy, most nightshades (tomatoes, potatoes, egglplant), pork, citrus (occasional lime and lemon but no oranges and grapefruit), MSG, artificial flavorings and colorings, high sugar foods, very low alcohol consumption. My conditions have all cleared and I am on no medications. I still take an occasional Aleve or histamine tablet as I really react to a lot of foods and it is almost impossible to keep them all out if I am at a friends house and they did the best they can do accommodate me but it still happens. It seems like a lot but there are still many food options. I have to say it took a long time for my body to heal but I saw a difference in the first week so I committed. I do feel fully healed at this point especially since dropping the nightshades.  The only thing I deal with is the eyeroll when I don't eat something someone tries to serve me because I am on the latest fad of being gluten free. I'm okay with it, I'm the one who has to live in this body. Oh, and because my body absorbs better I can only eat normal size portions now. In the past I didn't really gain weight so I could pig out like no one's business. So better for my system all around, I guess.

[sf990]

That is the same with me enlarged lymph nodes, poor skin (crazy skin actually, uncomfortable, itchy and painful at times) - I also have psoriasis, psoriatic arthritis, yellowing skin, chronic UTI's etc. I went gluten free three years ago without it being recommended by my GP and Rheumatologist. I did it because I decided to take the natural route to heal my body - it had nothing to do with Celiac as I knew nothing about it at the time so I was pretty overwhelmed when I jumped in. It seemed way too farfetched but my medications weren't working, I didn't want to do biologics but I could barely walk so I opened up to try another route and it worked, I mean, it really worked!

I also stay away from dairy, soy, most nightshades (tomatoes, potatoes, egglplant), pork, citrus (occasional lime and lemon but no oranges and grapefruit), MSG, artificial flavorings and colorings, high sugar foods, very low alcohol consumption. My conditions have all cleared and I am on no medications. I still take an occasional Aleve or histamine tablet as I really react to a lot of foods and it is almost impossible to keep them all out if I am at a friends house and they did the best they can do accommodate me but it still happens. It seems like a lot but there are still many food options. I have to say it took a long time for my body to heal but I saw a difference in the first week so I committed. I do feel fully healed at this point especially since dropping the nightshades.  The only thing I deal with is the eyeroll when I don't eat something someone tries to serve me because I am on the latest fad of being gluten free. I'm okay with it, I'm the one who has to live in this body. Oh, and because my body absorbs better I can only eat normal size portions now. In the past I didn't really gain weight so I could pig out like no one's business. So better for my system all around, I guess.

 

 

Thank you all for the replies.

 

I think for the time being, I will remain gluten free, just incase there's the slightest chance that it has been related to all of my adverse reactions. I just really don't want to have to go through it all again. I also forgot to mention, I suffer from severe ADHD, and have an almonst non existent menstrual cycle, which I also am hoping maybe theres a connection that could help me to make sense of these problems... I'm in a very demanding graduate school program, and the attention and brain fog issues can be downright debilitating to my wellbeing at times, as some of you might understand. 

 

Janpell, out of curiousity, why do you avoid citrus? I'm just wondering because ironically I woke up twice in just the past week feeling incredibly nauseous (this morning as well, to the point of waiting in the bathroom incase something came up) and I started thinking back on what I've been eating. I'm very aware of what I eat, and the only difference I can think of is ORANGES! And then I read your post. Do you also avoid lemon water? I've been squeezing lemon into my water was well recently, just as a tiny boost of vitamin C for this brutal winter. I'd be interested in hearing more about that. 

[janpell]

I stay away from oranges because they are like trigger foods for me. I can't have just one it usually turns into 4 or 5. Same with grapefruit, can't stop at 1/2 but end up eating 2 large ones and then get a very stiff neck with piercing pain. I don't go crazy on lemon and limes so I don't really notice anything.

Stress is also pretty bad on your system. Do you workout? I find a very demanding HIIT or Tabata workout clears my brain a lot. A food journal helps a lot. It took me years to give up tomatoes and potatoes and I miss them more than dairy and gluten. Two weeks nightshade and mostly citrus free  (along with above mentioned) and am fully at the place where I want to be.