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Deciding Whether To Have An Upper Gi Endoscopy

fromscratchmom

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fromscratchmom Newbie
fromscratchmom
Posted

Hi, all. I was told my new doctor that I should give up gluten, maybe not forever but at least for a year.

I asked the doctor if the blood test he had done meant that I had celiac disease or if it was more of a food intolerance that shouldn't be called celiac or what and he didn't really give me a good explanation. Mostly he just said that the test showed some gluten reactivity and that he would not call it celiac. Now that I've been gathering info, I'm wondering if he meant that the gluten reactivity level was not high enough to proceed with further testing that would lead to an official celiac diagnoses. So now that I know a little more about it I'll have to find out what the test was and the exact result.

When I got this news that I should give up gluten, I was just about to leave on a trip and I had a "detox diet" program on order from my chiropractor.

The doctor told me I didn't have to rush, just to get some books to read on it and go ahead and go on my trip. So I ordered two books from amazon and left home on schedule the next day. Ate terribly the whole time I was out of town but I did very well with my general feeling of well being for about 7 days. I kept telling my family members in Maryland that the B12 shots or the natural thyroid the doctor put me on must really be helping me tremendously. Then I got sick with some kind of stomach bug. I thought at first that it was the same IBS symptoms I've had on and off for over 20 years but I soon found out that I was really sick with fever and the whole shebang.

By the time I finally limped home from my trip, 2 days late my detox diet supplements had arrived as well as my gluten-free books and I was afraid of eating, a feeling I'm not unfamiliar with. So I started reading, started taking immodium (which I don't usually do no matter how much diarrhea I have), and started the Standard Process 21 day detox program. After a few days I went to my doctor to tell him I'd had what was most likely a virus but was getting worried about how long it was hanging on. He agreed I had a virus and sent me home. I found out that the detox plan might be "virtually gluten free" but had room for error and that I probably wouldn't order again in the future if I stayed gluten free.

Sooo... now I'm better from my virus, working my way through my detox and trying to be ready to feed myself in a real gluten free way.

Yesterday, a friend who has celiac disease recommended that I go ahead and see a GI doc and have the endoscopy. I'm really unsure... I don't want to start eating gluten again and I'll tell you why. As soon as I started reading my book I came across something that was new info to me... dermatitis herpetiformis. I was in the middle of a break out of a recurring, excrutiating rash that I've been getting for over 15 years now and as soon as I read the description and saw the pics of dermatitis herpetiformis I knew that is what I've had all this time that no doctor could diagnose for me and no nurse could cope with without losing her cool and trying to get out of the same room from me when seeing it. Thankfully, somehow, over the years, the rashes have gotten to be much milder but still definitely too itchy to ignore even if not as painful and I don't have them all the time, at least not most years.

I really see my friends point of view and I can imagine that having further info can be a great benefit in the long run. So I'm trying not to make a purely emotional decision, but I can't seem to talk myself into going back on gluten to get accurate results from an endoscopy, or to get a new recurrance of my rash which has never cleared up as quickly as it did with this last appearance and get that biopsied.

I'd like to hear from those who know: how likely will my time being mostly gluten free for the last couple of weeks make it that a quick endoscopy would give me false results? how long should I be back on gluten if I need to wait for scheduling an endoscopy? Is it worth it in the long run?

I'd like to believe that I wouldn't sabotage myself in the future feeling as glad to give up gluten as I do right now. But I know that I may be unrealistic if I can't admit that a more official diagnoses would help me.

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Skylark Collaborator
Skylark
Posted

It is completely up to you. If you feel like you will eat gluten without the diagnosis, then you need a biopsy. If you are willing to stick to the celiac diet (and you probably are celiac if you have positive bloodwork a rash that's spot-on for DH) there is no need for the biopsy.

As far as diagnosing, two weeks shouldn't be enough time to reverse intestinal damage but it would be best to go back to eating gluten until you can have it done. If you get a DH outbreak, you can insist on a biopsy of that as well. Folks here say it should be biopsied at the edge, not in the blistered part.

If you want more help interpreting your blood test, feel free to post the test and results and we'll try to help you out and explain better than your doctor.

fromscratchmom Newbie
fromscratchmom
Posted
  • Author

Thank-you for taking the time to respond. :) It truly means a lot to me in my worrying over this and trying to figure it all out.

I hate to go backwards by even a day, but I suppose I am concerned about how I might feel later when faced with all the situations I'm sure to face in the future where an "official" diagnoses might make some little difference to people who have had no experience with food intolerance and no need to consider whether or not mainstream medicine really has all the answers.

I'm sure I'll know which way I want to go after I sleep on it tonight. Then by deciding by morning, I can either get on with a life without gluten or at least start getting a test scheduled so that it doesn't delay my gluten free life for any longer than it has to.

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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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