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LookingforAnswers15

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi all, I have been away from the forum for some time. Since I knew I could not get any more tests done or see doctors until this next week, I tried avoiding thinking about my health problems as much as possible. Since I began working, that has helped keep my mind away and it was nice not to think about it. However, I would lie if I said that I was not thinking about it, but just not as much as I used to. I know all my test results by heart so I do pay attention to how I feel. Since the last time, I gained some weight. It was my goal (although I looked ok with the weight I had) because I was hoping it would help stop my hair loss. I am losing less hair but I am not sure if this is as result of this or seasonal changes. Unfortunately, for the last month or so, I have eaten some  gluten-free rice treats with chocolate. Prior to that I was just eating meat, fruits, veggies, and rice, cooking with an olive oil. I went to get my blood test yesterday and I am scared. In august, an MRI of my neck revealed enlarged lymph nodes in my neck and one in my shoulder. I do occasionally have a pain around my armpit and I am not sure if it is from that. I went to the specialist and he said nothing to worry about but it has always been on my mind. These are the results that worry me:

lymph% 50,4 (range 20-46)

neut% 39,1 (range 44-72)

neut# 1,80 (range 2,06-6,49)

They also found bacteria in my urine. My cholesterol is 5,2 (0,0-5,2). Proteins 81,0 (range 66,0-81,0).

WBC RBC -ok

It has been cold in my office but it seems that it is much colder there to me than to other people who come there. 

Not sure what to think but Dr. Google freaked me out yesterday. Please offer any advice you might have. I am hoping to see a rheumatologist next week since I had to weight over 2 months for this appointment. Thank you.

Lab just called me. They originally forgot to run Rheumatoid Factor test so they did later. It came back POSITIVE. I am just crying now because all of these results can be related to Rheumatoid arthritis, lupus, and other scary diseases. It seems like I have something else apart from celiac. As much as I try to calm myself all I see is more tests, more hospital, questionable or insufficient treatment if needed. The country I am in has a horrible health care and God forbid it is RA, I am screwed because I read in the newspapers how they do not provide good care/treatment to these patients.  

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DebbieAnnC Newbie
DebbieAnnC
Posted

All of these other diseases can be related to food intolerances. Give the diet time to work. Will they check you for deficiencies?

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

It has been almost 2 years since I have been gluten-free. I think it has to be something else at this point. No one would be happier than me to be wrong. I really do not know what they will do on Monday. I will ask them to check Vitamin B and D at least. Most of the tests that have been done were done because i kept requesting them or because I went to a private lab and paid for them out of pocket. No one is looking at me carefully. One immunologist that I thought would help me in the end did not. I got the referral for a rheumatologist because I insisted I had joint pain and was still not feeling well. I am just so scared what the future holds in store for me. I cannot believe how much life has changed in last few years. Thank you for responding.

ironictruth Proficient
ironictruth
Posted

This breaks my heart for you. I know how awful it is to have symptoms and no answers. I find I need to take breaks to alleviate my anxiety for a bit because it can produce more unrelated symptoms. 

Please do nice things for yourself. A bath with a glass of wine, book or candle. Save up some cash and spend it on yourself. Go feed some ducks with a friend. 

Plug away, one test at a time until you get your answer.

Gemini Experienced
Gemini
Posted

I have and always have had positive rheumatoid factor and it is related to the fact I have Sjogren's.  I don't even give it a second thought. I think I told you once before that you will never have normal blood results with autoimmune disease. If you have multiples, even more so.  It can also be difficult to figure out what you may have as many of the symptoms overlap.  Is your health getting worse or are you worried because of the test results alone?  If you are continuing to improve on the gluten-free diet and have not developed any new symptoms that have not gone away, then there is no reason to be this worried.  Even if you have new symptoms, worrying will only make you crazy. You have to find a balance where you can live your life without always worrying about what might happen. I don't mean to downplay your worries but stress will make things worse so you have to learn to chill a bit.  Please enjoy your occasional gluten-free treats also without all that guilt!

I hope the Rheumy can answer your questions and help you find a little peace!

cyclinglady Grand Master
cyclinglady
Posted
26 minutes ago, Gemini said:

I have and always have had positive rheumatoid factor and it is related to the fact I have Sjogren's.  I don't even give it a second thought. I think I told you once before that you will never have normal blood results with autoimmune disease. If you have multiples, even more so.  It can also be difficult to figure out what you may have as many of the symptoms overlap.  Is your health getting worse or are you worried because of the test results alone?  If you are continuing to improve on the gluten-free diet and have not developed any new symptoms that have not gone away, then there is no reason to be this worried.  Even if you have new symptoms, worrying will only make you crazy. You have to find a balance where you can live your life without always worrying about what might happen. I don't mean to downplay your worries but stress will make things worse so you have to learn to chill a bit.  Please enjoy your occasional gluten-free treats also without all that guilt!

I hope the Rheumy can answer your questions and help you find a little peace!

I love Gemini's no nonsense advice!  As usual, it is excellent.

Here's my two cents.  My grandma had RA and Lupus, my mom has Fibromyalgia and Graves, my MIL had Multiple Sclerosis.  Mom is still alive and kicking in her seventies.  Grandma and my MIL lived into their seventies too and that was long before any good medical support.  If I had known about celiac disease, I would have had them tested.  I'm sure that might have extended their lives.  

In keeping with family tradition, I have Hashi's and celiac disease and Diabetes to boot (suspect Type 2).  Will I get another AI disorder?  Who knows?  I just have to take each day as it comes and enjoy it to the fullest.  

Listen to Gemini and find ways to reduce your stress.  I spend a nice morning walking on trails with my old dog.  I shopped with my daughter who bought her first pair of platform sandals.  Memories of my old platforms back in the 70's came rushing back.  Guess what?  I bought a pair (not so high).  They'll look sweet with boot cut jeans (I can not and will not wear skinny jeans like my kid), and I'll get to be a little taller.  I promised my kid not to wear them with individual toe,  multi-color, socks like I did when I was in Jr. High!  

Hugs!

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Thank you all for your support. I agree that getting stressed out can just cause more symptoms. I am hoping to see a rheumatologist tomorrow. Any specific questions or tests to ask for? 

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cristiana Veteran
cristiana
Posted

Great words of advice there.  I have had my own fair share of weird blood test results but now try to keep in mind Gemini's wise words about autoimmune diseases affecting the figures, advice she has given me before too. :)  I had elevated protein for a while and worried myself sick.  It wasn't until I was bold enough to raise this matter direct with my gastroenteroligist that he said, 'Oh, we see this with celiac disease from time to time, it isn't that common, but it happens'.   So I would say one question is could celiac disease account for any of these blood results? 

Also, remember sometimes these weird blood results can be temporary.  A relative of mine had a whole raft of tests with a rheumatologist  for at times debilitating joint pain and after months of blood tests which showed inflammation, and scans -  and goodness knows what - the pain has gone and the medics think it might have been a virus.    We were all terribly concerned but it came to nothing in the end.   

 

Gemini Experienced
Gemini
Posted

You are so right, Christiana!  That stress buggar can make things worse temporarily.  My protein level was ever so slightly elevated again when tested in January and it had been behaving itself for awhile.  But with 2 deaths in the family in the past couple of years and additional family members diagnosed with diabetes and celiac, am I surprised?  No..........annoyed but not surprised.  Everyone has their low moments but you just have to soldier on and try not to let it derail you.  You just do the best that you can.

 

Gemini Experienced
Gemini
Posted
3 hours ago, LookingforAnswers15 said:

Thank you all for your support. I agree that getting stressed out can just cause more symptoms. I am hoping to see a rheumatologist tomorrow. Any specific questions or tests to ask for? 

I would ask for testing for related conditions that occur most frequently with Celiac.  I think Rheumy's usually have a standard battery of blood work they might do and then they go from there.  Good luck!

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Thanks Gemini. The doctor ordered some rheum. tests. 

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    • 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
    • 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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