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Blood Test Results

nhite

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nhite Newbie
nhite
Posted

I've had abdominal pains for the last 20 years. I have had discoid lupus for 31 years (I'm 37). I've had several symptoms of Gluten Intolerance and not known it. Have seen my GP for 2 years with blood work every 3 months, the latest round has been checking the beta carotine levels (even the lab tech had to look it up). I finally see a chiropractic neurologist for some unrelated pain and he thought the rash on my arms was similar to a gluten rash, not lupus. He ordered the celiac panel. One test came back positive. The Gliadin AB IGG was a 31 (greater than 30 is a moderate to strong positive). I saw my GP today as recommended by the chiropractor. My GP thought he had ordered the panel (until I told him no) and he said the result was minimal and unlikely a gluten intolerence but if I wanted he would refer me to a gastro (I saw him last year for a colonoscopy, endoscopy, and small bowel series, diagnosis: IBS). Also, my GP said that since I didn't have water blisters on the rash, it couldn't be related to gluten but he could refer me to a dermatologist. (oh, I don't have the weight loss by any stretch of the imagination, if anything, it's a major gain)

I don't know what to think. I'm tired of being at my GP's mercy. I know there's something wrong (more than lupus). I've been trying to eat gluten-free but after seeing my GP, I had Pizza Hut breadsticks! (wrong choice but it was good). Now my arms are starting to itch.

Does anybody have any advice for me? I don't really care to go back to the GI Dr. He was nice enough but I can't say I'm overly confident about seeing him and I don't know that I trust seeing a derm that my GP recommends or not.

Please help!

Natalie

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Guest jhmom
Guest jhmom
Posted

Hi Natalie, welcome :D

I was also told I had IBS for over a year, my GI doc performed every test known to man and they all came back negative, except the endoscopy which showed "patchy inflammation" but it still was not enough for him to accept Celiac as my diagnosis. I finally ordered a stool panel test from enterolab.com and it came back positive and I immediately started a gluten-free diet and could tell a difference within a couple of days, my abdominal pain was going away!

I do not know much about DH but I am sure it could be mistaken for the lupus rash. If I were you since one of your test results was positive you could always try the gluten-free diet to see if your abdominal pain improves as well as the rash. OR you may be able to find another GI doc which specializes in Celiac but that is only if you want to continue consuming gluten for additional test he/she may want to perform but if not try the diet!

Ironically my doctor suspects I have Lupus too. So far 2 of my blood test have come back positive and I have 6 of the symptoms from the criteria list?!?!? All this related, could be I guess, who knows!!!!!!

I hope you get answers soon and begin to feel better!

travelthomas Apprentice
travelthomas
Posted

Natalie,

I would suggest the gluten free diet before wasting too much time and money on doctors. A year ago people suggested that I get tested for parasites because of all my travels to third world countries. This winter, while down in Mexico, I had my blood and stools tested in a lab run by Italians. Because I am so careful about what I eat I knew what the results would be. Negative for any parasites. In Mexico those test cost me $42 U.S. :D

A gluten free diet is a healthy lifestyle anyway. On a brown rice, chicken, fish, and vegetable diet, it is really hard to put on weight. Just look at the billions of people who live on such a diet. Then look at the millions of people who live on a gluten diet. Who do you think looks healthier? :lol:

Good luck! B)

lauradawn Explorer
lauradawn
Posted

the IGG test can signify other things too, not just Celiac. I don't know much about DH but I agree form my understandding it can be very similar to lupus, but for different reasons. IT will be interesting to see what they find out, but here's another suggestion. If your rash is acutally DH, a biopsy of the rash will diagnose you Celiac. You wouldn't have to see a GI for the dx. If you have Dh you have Celiac.

nhite Newbie
nhite
Posted
  • Author

Just an update to last week's message. I went back on a gluten diet after 3 days off and I have an unbelievable rash now. I have an appointment with an internist on this coming Friday so I kind of want to keep the rash going a bit so he can see it. I did have an allergist appointment yesterday and she agreed that it looks like gluten and did a biopsy right away! I am so excited that I'm not imagining this and that there's another Dr. who agrees with me. Depending on what the internist says, I will be drafting a letter to my GP explaining why I'm dumping him and probably going to see the other physician in the office!

Natalie

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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • 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
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