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Started by Tigger,

5 posts in this topic

Posted

Hi everyone, I'm very new here and if someone can help me through the ropes I'd appreciate it.

I've had chronic diarrhea for over a year and do NOT know what to do at this point. I've been tested for all the usual suspects. I've had the blood test for celiac and it came back fine.

Can someone bet gluten sensitive and still have a "normal" celiac test.

Help.

Tigger

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Posted

Yep, you absolutely can have a problem with gluten and still have normal blood tests. Of course, the first question that comes to mind is: what blood tests did you have? (A lot of docs don't run the full panel, or require more positives than others might require for a diagnosis.)

The other thing to consider, besides the interpretation of the tests is whether or not your intestines had enough damage for the antibodies the blood tests look for to escape the intestinal tract. They may not have had that much damage - yet.

If you still want to investigate gluten intolerance AND your doc already ran the correct tests with truely negative results (not just inconclusive), then I would encourage you to try the gluten-free diet (strictly) for two months to see how you feel. Do not, however, try the diet until you are done with all diagnostic testing.

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I've had chronic diarrhea for over a year and do NOT know what to do at this point. I've been tested for all the usual suspects. I've had the blood test for celiac and it came back fine.
I would guess that you may have a food allergy or intolerance. If I were you I would ask for the full celiac panel, a wheat allergy test, casein and lactose intolerance test, and maybe allergy testing (like skin prick tests) to see if you are allergic to other foods like, soy, eggs, and nuts.
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I had the runs for 11 years so I've got you beat! :rolleyes: My Celiac blood work came back negative too. However I went on a gluten-free diet and my runs stopped in a very short time.

Since then I've had a DNA test and I do carry the main genes for Celiac and every time I'm accidently glutened I get the runs for weeks again. Some people "need" to have their doctor tell them a test was positive, I don't need that, the proof I get with my reactions to gluten is enough for me.

You might want to try a very simple diet for a few weeks, thats how I did it. I ate chicken, rice and some veggies for a week or so and bingo the runs stopped.

Susan

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Posted

Maybe you should ask your doctor about the possibility of collagenous colitis..... After a decade of permanent diarrhea, they finally found out that's what it was....

Good luck!

Karen

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Go To Topic Listing Celiac Disease - Coping With

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    • Irene Joanne
      Overwhelmed and unable to accept

      By Irene Joanne · Posted

      You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • GFinDC
      gluten free and awaiting a specialist

      By GFinDC · Posted

      Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Ennis_TX
      Cravings and Substitutions

      By Ennis_TX · Posted

      I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • egs1707
      Overwhelmed and unable to accept

      By egs1707 · Posted

      After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • NightSky
      Depression / anxiety issues

      By NightSky · Posted

      It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck

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