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New Here, Advice On Test Results

Renaye

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Renaye Contributor
Renaye
Posted

Hi!  I joined today but not really sure where I belong.  I currently go to a rhuemmy doc and on plaquenil for "sicca/sjogrens."  It has been an emotional ride.  My GI tested me for celiac, took me off of gluten for 6 months and then biopsied me which of course was negative.  I know I have something else going on but I wanted some help on my intitial bloodwork....

 

Prometheus celiac plus:  summary interpretation:  Results may support a diagnosis of celiac.

DGP IgG 4.3 +

DGP IgA 5.0 +

TTG IgA 1.1 -

EMA IgA  -

Total IgA 299

 

HLA typing results:  unable to interpret:  repeated attempts were made to resolve the HLA typing pattern however substances are present in the sample that interferes with the HLA method.  Then there are 8 categories that the risk runs from extremely high to extremely low....

 

I have had stomach pain since a teenager.  It is much better since I was tested for food intolerances.  I currently don't eat gluten, eggs, dairy and peanuts.  My chronic constipation is much better adding fiber.  I have dry eyes, mouth, skin, mild joint pain and terrible fatigue.  Any help is appreciated.

 

Thanks,

Renaye

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nvsmom Community Regular
nvsmom
Posted

That's good you've gone off gluten and your other food intolerances. Food intolerances cause inflammation and can make other autoimmune disease symptoms worse. Unfortunately it can take months for a symptom to resolve after you've removed the offending food, unless you are one of the lucky who notice improvements right away.

 

Your symptoms do sound a lot like celiac disease. i'm not aware of the lab ranges on those Prometheus lab tests so I can't comment on what they indicate. Do you have the lab's normal reference ranges for those tests?

 

To be honest, your symptoms sound even more like hypothyroidism (Hashimoto's) than they do celiacs. Sjorgen's causes dryness but so does Hashimotos (to a lesser extent). The joint pain, fatigue and constipation are pretty classic hypothyroidism symptoms. If you google it, and decide to look into testing for it, and you might as well as it is the most common autoimmine disorder ehich often tags along with other AI disorders, the tests to request are:

 

TSH (should be close to a 1)

Free T4 and Free T3 (should ideally be in the upper 50-75% range of your lab's reference range)

TPO Antibodies (should be close to non-existant)

 

I believe plaquenil can, over time, cause stomache problems so you might want to keep that in mind since you already have a battered stomach... keep an eye on it.

 

Best wishes.  :)

Renaye Contributor
Renaye
Posted
  • Author

nvsmomom

 

Here are the ranges: IgG less than 1.3

                                  IgA less than 2.9

                                 TTG IgA less than 10.3

                                  Total IgA 44-441

 

I have had my thyroid blood work and initially it indicated hyperthyroidism but I agree with you, I have symptoms of hypo minus the fact that I can not gain any weight. All thyroid blood work is currently normal.  I have RA, lupus, scleroderma risks from my dad's side of the family so I am really worried that I have something progressive.

 

Thanks,

Renaye

Takala Enthusiast
Takala
Posted

Just the sjogren's will knock you on your butt concerning the fatigue issue.  I don't have any experience with taking anything for it other than eye moisturizing drops so I don't know if plaquenil actually eases any of the dryness symptoms.   If you can, start studying what time of day you have more physical energy, and try to do things at that time, allowing for you are going to be tired anyway, later.  

 

Being very mildly glutened, after you've been gluten free for awhile, will also be extremely fatiguing.  I used to hang on an arthritis board for awhile way back, but what I observed was discouraging, the more pharmaceuticals that people were plied with to try to "fix" their symptoms from the disease or the last drug they took, the more new symptoms they had, and the faster they deteriorated.  And there was a large level of denial that the drugs which were causing the symptoms were the culprits.  Drugs such as NSAIDS and steroids and birth control pills can cause various degrees of depression and more chronic pain as they are hard on the liver and kidneys, and a lot of people were taking more than one :ph34r:  and then mixing them with tylenol, which is crazy :blink: unless you hate your liver.   Plaquenil is an anti malarial and about as mild as you can go, and takes months to kick in, but, is it really helping ?  

 

Did the GI initially tell you that he/she suspected you were celiac or gluten intolerant based on symptoms, or any tests, before that 6 month gluten free trial, and did that make you feel better ? 

Renaye Contributor
Renaye
Posted
  • Author

I changed GI doctors and the first time I went to this one, he did ANA, celiac, thyroid panels.  My complaints were fatigue, which was a new symptom and constipation that had gotten worse  to the point where I couldn't go at all.  The tests came back said it could be celiac, hyperthyroidism and scleroderma.  Wham! 

 

So I got a referral to a rhuemmy, went on a gluten-free diet and cried alot. ANA is positive and I have low white blood cell counts.  All other AI tests are negative. Couldn't really see any difference after going gluten-free.  My mood lifted and stomach started on and off functioning again after I took out dairy and eggs.  I don't ever think I will go back to gluten due to the scare of scleroderma. 

 

Before plaquenil, I had trouble getting out of bed. Now I am functioning again.  Don't really know if it is the drug or my mood is better.

 

Thanks for listening

 

Renaye

nvsmom Community Regular
nvsmom
Posted

nvsmomom

 

Here are the ranges: IgG less than 1.3

                                  IgA less than 2.9

                                 TTG IgA less than 10.3

                                  Total IgA 44-441

 

I have had my thyroid blood work and initially it indicated hyperthyroidism but I agree with you, I have symptoms of hypo minus the fact that I can not gain any weight. All thyroid blood work is currently normal.  I have RA, lupus, scleroderma risks from my dad's side of the family so I am really worried that I have something progressive.

 

Thanks,

Renaye

It looks like you have a couple of positive tests, and those DGP tests are the newest and pretty specific to celiac. I think it's wise that you are sticking to the gluten-free diet (for life). Hopefully over time it will help clear up some of your other symptoms.

 

I am about 8 months gluten-free now. It took a good 6+ months for my joint pain to go away; it took so long that I had pretty much convinced my self that there was no way it was related to eating gluten... I I'm not patient. LOL  There is a chance that my joint pain was related to my Hashi's and that my treatment is finally getting close to optimal leves (not sure about this) or that it was something else that just passed (could be).  Anyway, remember that going gluten-free doesn't fix things immediately. It will stop the autoimmune attack (over a few months), then you have to heal, and then your body has to work at getting things back to optimal levels.  It's taken more than a few members of this forum a few years to get to a point of normal health. Just keep pluggin' away at it.  :)

 

I changed GI doctors and the first time I went to this one, he did ANA, celiac, thyroid panels.  My complaints were fatigue, which was a new symptom and constipation that had gotten worse  to the point where I couldn't go at all.  The tests came back said it could be celiac, hyperthyroidism and scleroderma.  Wham! 

 

So I got a referral to a rhuemmy, went on a gluten-free diet and cried alot. ANA is positive and I have low white blood cell counts.  All other AI tests are negative. Couldn't really see any difference after going gluten-free.  My mood lifted and stomach started on and off functioning again after I took out dairy and eggs.  I don't ever think I will go back to gluten due to the scare of scleroderma. 

 

Before plaquenil, I had trouble getting out of bed. Now I am functioning again.  Don't really know if it is the drug or my mood is better.

 

Thanks for listening

 

Renaye

 

You've been given a hard hand.  I'm glad the plaquenil is helping.  :) Were you told to get your eyes checked every 6 months or so while on it? I know it's most common side affects can affect the eyes.

 

If you don't mind my asking, what were your thyroid tests like? How are they treating you for that?  Thyroid issues are notoriously slow and finicky to treat. I've been treating my hypothyroidism for 6 months and I'm just starting to get minor improvements of my symptoms.

 

Hang in there. (hug)

Renaye Contributor
Renaye
Posted
  • Author

I have been gluten-free since 4-2011 and dairy, egg and peanut free since 5-2012.  My stomach is better....I wish I was tested for problems at age 13 instead of 40 when the bottom dropped out. 

 

Yes I get my eyes checked.  Great eye doc and he has first hand knowledge with autoimmune diseases, so I am in good hands. 

 

My initial thyroid blood work in 4-2011 indicated hyperthyroidism (low TSH at 0.307).  Six months later when the only thing that I changed was to go gluten-free, my numbers were normal and have stayed normal but I don't know exactly what that is.  I actually feel like my thyroid swings from hyper to hypo but not sure if that can really happen.  I am not being treated.

 

I have searched this website since 2011 and finally felt that I wanted extra support in maintaining this life style.  It is really difficult working full time as a teacher and having kids at home.  The worst is going out to eat or vacations, but I am hanging in there.  I just want justification now that I should continue doing this since my blood work is all weird....like you have something, but it really is nothing, yet...

 

Renaye

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mushroom Proficient
mushroom
Posted

Yes, it can happen.  Here is what Mary J. Shomon, a thyroid expert, has to say:

 

Open Original Shared Link

by Mary J. Shomon

"Frequently, readers write in frustration, stating that they have been diagnosed as hypothyroid, but have symptoms of both hypothyroidism and hyperthyroidism.

I'm gaining weight, exhausted all the time, and my hair is falling out, but I'm also having high blood pressure, my heart is racing all the time, and I get diarrhea. Can I actually be hypo and hyper at the same time?

The answer is yes. While you should always see your doctor regarding any concerns with blood pressure, heart rate, or other symptoms, here are some important factors to consider.

You Have Both Hashimoto's and Graves'

Some patients actually have both Hashimoto's and Graves' disease antibodies, which puts the thyroid into a push-pull situation, where it cycles up and down through hypothyroidism and hyperthyroidism. This is not a very common situation, but hypothyroidism patients who frequently have hyperthyroidism symptoms should ask their doctors for full antibody profiles to detect the presence of both Hashimoto's thyroiditis and Graves' disease."

 

I do not know a lot about thyroid problems.  Gemini, a frequent poster, does.  Hopefully she will chime in and give you some help.

Renaye Contributor
Renaye
Posted
  • Author

I am scheduled to go back to the GI doctor in late March so I will ask him about my thyroid again.  Thanks!

 

Renaye

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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