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Confused Newbie W/ Negative Diagnosis

bklynceliac

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bklynceliac Apprentice
bklynceliac
Posted

Hey all, new to posting, but have been reading the site for a few months. Let me start off by saying thanks to all you who have indirectly been giving me a lot of great advice on how to feel better. This board is really amazing. But, that's not why I called....

here's the rundown. I'm in my late 20's, and in early March began experiencing serious gastro symptoms. All D, all the time pretty much. It came on all of a sudden and didn't seem particularly tied to any food intake. After about 6 hilarious weeks of that my PCP prescribed flagyl, thinking it would either kill a mysterious virus or help with an undetected bowel disease. The flagyl helped the D, but brought on very bad abdominal pains. Those lasted for a few months and bathroom flair-ups continued about once a week. With that I've also had very bad exhaustion, and sporadic dizziness. A nutriotionist advised me to attempt a gluten-free, lactose-free diet, which i did, and seemed to help. I have since elliminated lactose as a possible culprit, as ice cream has become a good friend. I recently went to a GI and had a colonoscopy/endoscopy. I told her I wanted to check for celiac and announced that I knew I would have to go back on gluten for it to work (she wasn't going to suggest that - good thing I read this board). So I started in with the bagels and pasta etc (I had been off gluten for about 3-4 wks), and noticed extreme dizziness, exhaustion, and brain fog after eating them. The gastro symptoms didn't come back however. Anyway, I just heard from my doctor and she said all biopsies came back negative. So now I don't really know what to do. I've resumed a gluten-free diet, and the exhaustion and foggy-ness have subsided a bit, but abdominal pain and D are still frequent visitors. Not really sure what to try next. Any ideas or advice would be much appreciated....

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CarlaB Enthusiast
CarlaB
Posted

Welcome!

I had a negative biopsy, but had been off gluten longer than you and the six week challenge was not long enough. I knew gluten was the culprit, but I needed to know I wasn't crazy or imagining it, so I got tested by www.enterolab.com. If you are comrfotable being off gluten without a test saying you need to be, just stay off it. I needed a test to give me the motivation to make this change for life. My test also showed a casein intolerance which I would not have even considered had I not been tested for it.

Your digestive issues may go away if you stay gluten-free, or you may have other intolerances like I did.

AndreaB Contributor
AndreaB
Posted

I would also encourage you to use enterolab if you can scramble together the funds. We got tested (all the tests they offer) and found out we are intolerant to gluten and soy. It may take some time for your body to bounce back also, or it may be other allergies or intolerances. You may also want to consider allergy testing. I had allergy testing done and then had the whole family tested by enterolab. I will pursue allergy testing for the others if it is something we can't figure out though.

Welcome. :D

RunnerNYC Rookie
RunnerNYC
Posted

Hey bklynceliac,

Seems like we're in similar places. I'm in my early 20s living in Brooklyn as well - even though my ID is NYC...

Anyway, I went off gluten with improvement, but now that I'm going back on for the tests, I have some good days and some bad - as opposed to all bad days. Maybe you started to repair after going off gluten and your sensitivity hasn't had a chance to kick in again?

I haven't gone for my tests yet, so if they all come back negative, I guess I'm not sure what my next step will be.

To me, the enterolab tests sound like the next best thing, but I don't understand why we couldn't get get the tests done through another doctor that would be covered.

Anyways, good luck with your diagnosis - just wanted give a shout out to brooklynite!

Rikki Tikki Explorer
Rikki Tikki
Posted

The thing is you can have celiac and have a negative biopsy because the damage has not been extensive, at least I have read many people write that.

Did you have the blood test for celiac? If you feel better gluten free don't worry about having an acutal diagnosis, just do it.

It took me about 3 years to really feel better after diagnosis and going gluten-free

bklynceliac Apprentice
bklynceliac
Posted
  • Author

I did have blood test, it was negative too. Going on the diet anyway makes some sense, but i'm not sure i have the patience/fortitude to stick something out for three years without concrete results or evidence that it's the right thing to do. You know? Enterolab makes a lot of sense. I'll ask my GI what she thinks.

Oh, and thanks for the shoutout 'Runner'. Not sure what part of brooklyn you're in, but if near park slope there's a great health food store called "Back to the Land" that I highly recommend. Good range of gluten-free products.

  • 2 weeks later...
rogue Rookie
rogue
Posted

I tested negative for celiac disease for 8 years before I tested positive. It wasn't until I went on a super gluten-rich diet for 3 months did my blood tests finally go off the charts. I was finally diagnosed with celiac disease, even though I still have a negative biopsy. Keep trying, and if you feel better gluten free- then I would say stay far away from it.

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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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