Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Taking Digestive Enzymes?


Tigercat17

Recommended Posts

Tigercat17 Enthusiast

Hi, I'm new at this. I'm not sure if I have a celiac disease or not. I had an endoscopy done Friday & I won't know the results until next week, but they do suppect I may have a wheat gluten sensitivity. I'm sure this is a dumb question, but is that the same as celiac diease & having gluten sensitivity?

Also, I wondered if anyone tried digestive enzymes to relieve stomach symptoms? I'm really having a hard time eating. It seems like I'm full after two bits of food & then I can only eat half of my meals. I'm lossing weight & I'm only 100 lbs at 5'1". I can't afford to lose anymore weight. And my stomach feels upset & so tender. I'm afraid to move around after I eat. I just feel this horrible fullness all of the time.

I've been taking Prilosec also for the last 6 weeks. At 40mg twice a day. It's a really high dose. I wasn't having these sypmtom until about a week ago. I wonder if I just don't have any acid in my stomach & my food isn't digesting. I wish I never started taking them!

Someone told me digestive enzymes might help me? I have to say I'm a little weary about taking all of this medicine. I just don't want to do more damage to myself. I'm wondering if orange juice might help? Foods taht are acidy? I think I'm stopping the Prilosec today. I really think this is causing my problems.

Has anyone had anything simialr happen to them? Your help would be so much appreciated! Thank-you!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient
Hi, I'm new at this. I'm not sure if I have a celiac disease or not. I had an endoscopy done Friday & I won't know the results until next week, but they do suppect I may have a wheat gluten sensitivity. I'm sure this is a dumb question, but is that the same as celiac diease & having gluten sensitivity?

Also, I wondered if anyone tried digestive enzymes to relieve stomach symptoms? I'm really having a hard time eating. It seems like I'm full after two bits of food & then I can only eat half of my meals. I'm lossing weight & I'm only 100 lbs at 5'1". I can't afford to lose anymore weight. And my stomach feels upset & so tender. I'm afraid to move around after I eat. I just feel this horrible fullness all of the time.

I've been taking Prilosec also for the last 6 weeks. At 40mg twice a day. It's a really high dose. I wasn't having these sypmtom until about a week ago. I wonder if I just don't have any acid in my stomach & my food isn't digesting. I wish I never started taking them!

Someone told me digestive enzymes might help me? I have to say I'm a little weary about taking all of this medicine. I just don't want to do more damage to myself. I'm wondering if orange juice might help? Foods taht are acidy? I think I'm stopping the Prilosec today. I really think this is causing my problems.

Has anyone had anything simialr happen to them? Your help would be so much appreciated! Thank-you!

Sorry to hear you are feeling so poorly. Are you still eating gluten? That's the way I used to feel when I was glutened. I was taking a medication that had to be taken with food but could barely get down enough food to enable me to take the medication. And it was the medication that was glutening me. What a vicious circle.

Have you had acid reflux, that you are taking the Prilosec?

Digestive enzymes have helped me a lot in the past. I used to think I didn't have enough stomach acid, but in reality tests showed that my pancreas was not producing enough enzymes, and I took the enzymes for over six months. They made a huge difference to me.

You will be glad to get your results; don't forget that even if they are not positive you could still have a false negative result, so it is not conclusive and if you have trouble wlith gluten or think you do you should still eliminate it and see what happens.

Tigercat17 Enthusiast
Sorry to hear you are feeling so poorly. Are you still eating gluten? That's the way I used to feel when I was glutened. I was taking a medication that had to be taken with food but could barely get down enough food to enable me to take the medication. And it was the medication that was glutening me. What a vicious circle.

Have you had acid reflux, that you are taking the Prilosec?

Digestive enzymes have helped me a lot in the past. I used to think I didn't have enough stomach acid, but in reality tests showed that my pancreas was not producing enough enzymes, and I took the enzymes for over six months. They made a huge difference to me.

You will be glad to get your results; don't forget that even if they are not positive you could still have a false negative result, so it is not conclusive and if you have trouble wlith gluten or think you do you should still eliminate it and see what happens.

Thanks so much for taking the time to help me!

I've been avoiding bread and pasta for the last two days. I did have some Total cearl & Cherrios yesterday. I couldn't even eat a whole bowl. Which is very not like me. I wasn't sure if I should eat them or not. But, I haven't had any burning in my throat in the last few days. Which is good. My throat still hurts, but it doesn't burn. My main concern right now is my stomach & not being able to eat.

The docs weren't sure if I have acid reflux or not. It all started in July with an upper respiratory infection. My throat hurt so bad for a month. I couldn't even talk the whole month of July. One ENT told me she thought it was post viral nueropathy. Then another ENT asked me if I could try Prilosec? Eventhough my throat wasn't red he thought it was LPR. So, I did. At least I can talk now, but like I said my throat still hurts. I was alos on Medol (steriod) for 3 weeks. I was losing weight being on that ,too. I have been feeling some burning in my throat occ. So, I never been properly diagnoised. My endosocopy did find a hiatal hernia, too. :(

Do you think there's gluten in the Prilosec? That would make a lot of sense. I swear everytime I took it I felt burning in my throat. I'm not sure if that was it or not.

And I really can't wait to get my results from the EGD! That way I'll know for sure it that's what's causing a lot of my problems & get started to feeling better!

Thanks for your help!

burdee Enthusiast
Hi, I'm new at this. I'm not sure if I have a celiac disease or not. I had an endoscopy done Friday & I won't know the results until next week, but they do suppect I may have a wheat gluten sensitivity. I'm sure this is a dumb question, but is that the same as celiac diease & having gluten sensitivity?

Also, I wondered if anyone tried digestive enzymes to relieve stomach symptoms? I'm really having a hard time eating. It seems like I'm full after two bits of food & then I can only eat half of my meals. I'm lossing weight & I'm only 100 lbs at 5'1". I can't afford to lose anymore weight. And my stomach feels upset & so tender. I'm afraid to move around after I eat. I just feel this horrible fullness all of the time.

I've been taking Prilosec also for the last 6 weeks. At 40mg twice a day. It's a really high dose. I wasn't having these sypmtom until about a week ago. I wonder if I just don't have any acid in my stomach & my food isn't digesting. I wish I never started taking them!

Someone told me digestive enzymes might help me? I have to say I'm a little weary about taking all of this medicine. I just don't want to do more damage to myself. I'm wondering if orange juice might help? Foods taht are acidy? I think I'm stopping the Prilosec today. I really think this is causing my problems.

Has anyone had anything simialr happen to them? Your help would be so much appreciated! Thank-you!

Read "Why Stomach Acid is Good for You" by Jonathon Wright, MD. After too many years of taking acid blockers (Zantac, Tagamet, Mylanta) prescribed for 'gastritis' which was really celiac disease related indigestion, I felt overly full after eating small amounts, I easily refluxed and I noticed food stayed in my stomach for HOURS. I was also frequently constipated. I suspect I would have been diagnosed with 'gastroparesis (slow stomach emptying)' if I would have seen a mainstream doc.

Abstaining from acid blockers and eating smaller meals helped my digestion somewhat. Taking digestive enzymes also improved my digestion somewhat. However, after I read Dr. Wright's book and talked to a celiac friend who had seen Dr. Wright for digestive problems, I decided to try taking HCl capsules. I had all the symptoms of too LITTLE stomach acid, not too much. The docs who prescribed the acid blockers NEVER tested me for stomach acid levels. They just assumed I had too much, because I refluxed. Actually certain foods can relax the lower esophageal valve which allows foods to reflux. Avoiding those foods (chocolate, caffeine, alcohol, onions, tomato and citrus based foods) helped me have less reflux. However taking betaine hydrochloride improved my digestion so much that I no longer feel overly full after eating proteins or fats. Even when I overeat, that full feeling disappears within an hour or so. Best of all, I had less irregularity.

Even though acid blockers suppress the symptoms of reflux, they don't address the cause. Worse yet, they can allow bacteria to pass from the stomach into the intestines and cause overgrowth or infections, because normal levels of stomach acid kills food born bacteria. I struggled with numerous bacterial overgrowth episodes before I starting taking HCl capsules to increase my stomach acid levels. Those acid levels are often lower in older people. (I'm 62.) I don't know whether that happens after years of taking acid blockers (as I did) or just natural aging. However, taking HCl relieved my 'gastroparesis' symptoms so that my digestion improved.

SUE

Tigercat17 Enthusiast
Read "Why Stomach Acid is Good for You" by Jonathon Wright, MD. After too many years of taking acid blockers (Zantac, Tagamet, Mylanta) prescribed for 'gastritis' which was really celiac disease related indigestion, I felt overly full after eating small amounts, I easily refluxed and I noticed food stayed in my stomach for HOURS. I was also frequently constipated. I suspect I would have been diagnosed with 'gastroparesis (slow stomach emptying)' if I would have seen a mainstream doc.

Abstaining from acid blockers and eating smaller meals helped my digestion somewhat. Taking digestive enzymes also improved my digestion somewhat. However, after I read Dr. Wright's book and talked to a celiac friend who had seen Dr. Wright for digestive problems, I decided to try taking HCl capsules. I had all the symptoms of too LITTLE stomach acid, not too much. The docs who prescribed the acid blockers NEVER tested me for stomach acid levels. They just assumed I had too much, because I refluxed. Actually certain foods can relax the lower esophageal valve which allows foods to reflux. Avoiding those foods (chocolate, caffeine, alcohol, onions, tomato and citrus based foods) helped me have less reflux. However taking betaine hydrochloride improved my digestion so much that I no longer feel overly full after eating proteins or fats. Even when I overeat, that full feeling disappears within an hour or so. Best of all, I had less irregularity.

Even though acid blockers suppress the symptoms of reflux, they don't address the cause. Worse yet, they can allow bacteria to pass from the stomach into the intestines and cause overgrowth or infections, because normal levels of stomach acid kills food born bacteria. I struggled with numerous bacterial overgrowth episodes before I starting taking HCl capsules to increase my stomach acid levels. Those acid levels are often lower in older people. (I'm 62.) I don't know whether that happens after years of taking acid blockers (as I did) or just natural aging. However, taking HCl relieved my 'gastroparesis' symptoms so that my digestion improved.

SUE

Wow! You sound so much like me! I'm speechless! And so grateful that I found you & this forum. Thanks so much for sharing your story. I'm sorry you had so many problems. I can relate. I too, feel like food is just sitting in my stomach for Hours. it's hard for me to eat cause my stomach feels full all the time. I never felt like this before. I've only been on the Prilosec for 6 weeks, but at a large dose - 40 mg twice a day, so I'm wondering if my body will recover form this. I'm only 38. I just over came thyriod cancer last year (I had Hasimoto for 8 years pior) & I take good care of myself. I also have enlarged lymph nodes in my abominal area for the last 8 years. The doctors been watching them closely. But, now I'm wondering if I really do have Celiac. It would make so much sense. I really don't look sick - just skinny most of the time, but now I way too thin.

When I asked my GI doc if the fullness feeling I've been having all the time was becuase of the Prilose he just looked at me like I was crazy & said No.

I was never tested for stomach or acid reflux for that matter. They just said what to try them for your throat pain since I wasn't able to talk.

Did you take the HCI on your own? I did do some reach about them & I thought I needed a prescription?

I am taking AbsorbAid (digestive enzyme) since last night. And I'm tring to eat more raw food like fruits.

I tried to do some reach on the AbsorbAid to make sure it was safe, but I couldn't find anything? Do you know how safe digestive enzymes are? Have you had any problems with them? I don't want to become depend on them either (like the Prilosec). Makes me worried....epesically since my doctor told me to wait til I got my results to do anything. But, I feel horrible & I can't afford to lose anymore weight. I used to have so much trust in my doctors. Now I'm not too sure. When I asked him about the AbsordAid, he acted like he never heard of it? I just don't want to do any damage to myself. I just want to get better.

Thanks so much for your help. I've been feeling so anxious about all of this & it's not making my stomach feel any better.

burdee Enthusiast
Wow! You sound so much like me! I'm speechless! And so grateful that I found you & this forum. Thanks so much for sharing your story. I'm sorry you had so many problems. I can relate. I too, feel like food is just sitting in my stomach for Hours. it's hard for me to eat cause my stomach feels full all the time. I never felt like this before. I've only been on the Prilosec for 6 weeks, but at a large dose - 40 mg twice a day, so I'm wondering if my body will recover form this. I'm only 38. I just over came thyriod cancer last year (I had Hasimoto for 8 years pior) & I take good care of myself. I also have enlarged lymph nodes in my abominal area for the last 8 years. The doctors been watching them closely. But, now I'm wondering if I really do have Celiac. It would make so much sense. I really don't look sick - just skinny most of the time, but now I way too thin.

When I asked my GI doc if the fullness feeling I've been having all the time was becuase of the Prilose he just looked at me like I was crazy & said No.

I was never tested for stomach or acid reflux for that matter. They just said what to try them for your throat pain since I wasn't able to talk.

Did you take the HCI on your own? I did do some reach about them & I thought I needed a prescription?

I am taking AbsorbAid (digestive enzyme) since last night. And I'm tring to eat more raw food like fruits.

I tried to do some reach on the AbsorbAid to make sure it was safe, but I couldn't find anything? Do you know how safe digestive enzymes are? Have you had any problems with them? I don't want to become depend on them either (like the Prilosec). Makes me worried....epesically since my doctor told me to wait til I got my results to do anything. But, I feel horrible & I can't afford to lose anymore weight. I used to have so much trust in my doctors. Now I'm not too sure. When I asked him about the AbsordAid, he acted like he never heard of it? I just don't want to do any damage to myself. I just want to get better.

Thanks so much for your help. I've been feeling so anxious about all of this & it's not making my stomach feel any better.

First of all, stop taking the Prilosec. If you get reflux, just drink cool water to dilute the acid and wash it back down. Avoid foods that weaken the lower esophageal valve like alcohol, caffeine, chocolate, onions, tomato and citrus based foods.

Then get tested for celiac disease, which often causes digestive problems. Celiac damaged intestines don't process food well, which slows the digestive process. If you want a mainstream doc to test you for celiac disease, you will need to keep eating gluten for the blood test and possibly endoscopy. If you are not currently eating gluten and don't want to resume eating gluten, consider Enterolab (Open Original Shared Link) which diagnoses gluten intolerance with stool tests and the celiac gene with mouth swab tests. I used E-lab for celiac disease and dairy intolerance diagnoses. My doc accepted their lab results.

READ the ingredients on your digestive enzyme. Many contain 'malt diastase' which is from barley, a source of gluten. If you take an enzyme with gluten, you will perpetuate gluten induced digestive problems. If you eliminate gluten, a gluten free digestive enzyme may be enough. However, if you still have digestive problems you might consider replenishing your stomach acid.

In "Stomach Acid is Good For You", Dr. Wright suggests testing for low stomach acid by drinking a tablespoon of appe cider vinegar diluted with a little water before a meal. If that improves your digestion, you may have low stomach acid. He describes other tests. So you may want to read his book. If the vinegar test suggests you have low stomach acid, you may consider taking betaine hydrochloride capsules.

I buy HCl at Super Supplements, but I can also get them at Whole Foods Nutritional Supplements section. Use an HCl product which includes pepsin which digests proteins and triggers biochemical processes to digest fats. If you decide to try HCl, please avoid foods that exacerbate reflux, because you can reflux even more acid with HCl. Also start with one capsule before meals which contain protein and fats. Slowly add more capsules per meal until you have normal digestion. At your weight and height, you may not need any more than maximum 3 with a high protein meal. I'm 5'5" and 100-105#. I need 4 capsules with high protein meals and only 3 capsules with more vegan meals (which contain fats). I slowly worked up to this amount over the past 2 years. (My 6'4" celiac friend needed about 6 capsules with every meal.) You will need to experiment with amounts for you.

Feel free to pm me if you have other questions.

SUE

Mrs. Smith Explorer

I take enzymes pretty regularly and they seem to help. I want to point out though, that if you have ulcers or mucosal damage in your dudenum, Prilosec can be very effective in healing them. If the acid keeps damaging it can be a vicious cycle. I have taken it a few times and it has healed my celiac induced ulcers, along with a strict diet, of course. I digest normally when taking these, too. It just stops the burning and helps me eat. Without it I could only eat white rice. If you have too much acid or the acid is causing damage it can be a lifesaver. A gluten free diet for more than 2 years is supposed to heal the gut, so Im hoping for that. Its been 9 months for me and I still get these symptoms when glutened for weeks on end. Hang in there and keep on those Dr.s!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Tigercat17 Enthusiast
I take enzymes pretty regularly and they seem to help. I want to point out though, that if you have ulcers or mucosal damage in your dudenum, Prilosec can be very effective in healing them. If the acid keeps damaging it can be a vicious cycle. I have taken it a few times and it has healed my celiac induced ulcers, along with a strict diet, of course. I digest normally when taking these, too. It just stops the burning and helps me eat. Without it I could only eat white rice. If you have too much acid or the acid is causing damage it can be a lifesaver. A gluten free diet for more than 2 years is supposed to heal the gut, so Im hoping for that. Its been 9 months for me and I still get these symptoms when glutened for weeks on end. Hang in there and keep on those Dr.s!

Hi there, thanks for your advice.

I did have an endoscopy done Friday. I'm stiil waiting for the results, but I do have the report. The doctor states that there was "diffuse moderately scalloped muscosa found in the entire duodenum" Do you think that means that the mucosa is damaged?

I'm trying to avoid wheat gluten right now just to see if I gets better. I really don't know what I'm doing. I was feeling a little better until I took the Prilosec again tonight. Now my stomach just hurts...I feel like I'm being poised. i'm going to call my GI doctor tomorrow & ask him if I should get off the Prilosec. He did tell me Friday to wait until the tests came back. But, I'm just feeling worse.

Thanks!

OptimisticMom42 Apprentice

You used the term wheat gluten twice. You'll have to do some reading. It's wheat, rye, oats, barley and any of the crazy names they go by like natural flavoring. It would be best if for awhile you only ate freshly cooked unseasoned meats (you have to replace all your seasonings), fresh veggies and fresh fruits. Once you are feeling better you can add more foods to your diet. Read, Read, Read...... we are here for you.

Hope this helps

RA

Mrs. Smith Explorer
Hi there, thanks for your advice.

I did have an endoscopy done Friday. I'm stiil waiting for the results, but I do have the report. The doctor states that there was "diffuse moderately scalloped muscosa found in the entire duodenum" Do you think that means that the mucosa is damaged?

I'm trying to avoid wheat gluten right now just to see if I gets better. I really don't know what I'm doing. I was feeling a little better until I took the Prilosec again tonight. Now my stomach just hurts...I feel like I'm being poised. i'm going to call my GI doctor tomorrow & ask him if I should get off the Prilosec. He did tell me Friday to wait until the tests came back. But, I'm just feeling worse.

Thanks!

Im not sure what that medical term means, but sounds like it might mean some damage. I hope the Dr finds some kind of answer. Maybe you cant take Prilosec? It helped me so much and I never had any side effects from it. If I took apple cider vinegar, I would be in so much pain and Im sorry but a glass of cool water does NOT work for me. I have heartburn because of celiac induced ulcers and damage to my small intestine, so stomach acid actually is not good if they are flaring. Keeping the acid levels down helps them to heal. It is hard, I know, I was sick for years and 8mos into gluten-free diet I finally feel normal again.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      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
      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
      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
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.