Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Questions About Starting Workouts Again


Greenling

Recommended Posts

Greenling Newbie

Hi all,

I was just diagnosed last week (high tTG and positive endoscopy) and I'm very much trying to figure out the "recovery" aspect of Celiac. I feel like I'm getting a handle on the diet (I've been gluten-free for 5 weeks now, doing a whole foods approach), but am a bit lost at the gym. My primary symptoms were, strangely, a chronic fever and cough (stretching back over 10 years), along with muscle stiffness and joint pain. Up until the last 18 months or so, I was able to lift weights and continue cardio (running, walking, and elliptical) fairly well, allowing for periods off when the fever was really strong. But the last year has been very rough, the fever and the fatigue just knocked me off my feet and I pretty much had to stop going to the gym about 6 months ago.

I no longer have the fever or cough, but the fatigue is ongoing and the muscle stiffness is intermittant (as are the GI symptoms). However, I really want to get back to the gym as I've lost 15 pounds (normally I'd be delighted, but I'm sure some of that was muscle). My doctor has encouraged me to "do as much as I feel comfortable with", but "not too much too soon or I'll hold up my recovery." So, I'm trying to figure out what that means. I thought your experience would be helpful. My questions:

1. When you were starting back to the gym, did you take more rest days and do longer/more intense (relatively speaking) workouts on the days you worked out? or do shorter, less intense workouts everyday?

2. Was it better for you to do cardio and weights on the same day or to alternate them to give your body a break? How many days did you start with?

3. What signs did you watch for that let you know that you were overdoing it?

4. Any thing else that you had to alter in your routine?

5. How long did it take you to feel like you were making fitness gains?

Thank you in advance for your help!

Greenling

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 85
  • Created
  • Last Reply
NoodleUnit Apprentice

I'll be watching this thread with interest. I get severe joint pain along with neuropathy and muscle fatigue, I was thinking of starting working out again but I've had it all flare up again over the last week or so and don't want to push myself into ever decreasing cycles of fatigue and work.

One thing I will say though ( and I'm sure as a long term gym goer you already know this ) rest is vital even when you're fit. I'd imagine with a digestive system that isn't functioning properly, it has to be even more important now as you struggle to absorb the nutrients you need. It's very possible to make great gains without working yourself overly hard, so I would advocate working smart rather than hard.

My partner, who has dairy problems, has recently started accepting that she's not getting any younger and needs to be smart if she wants to keep running. She reduced her daily runs and really focusses each run on something specific she wants to achieve. The gains she has made have been astonishing. From being injury prone and fatigued, she's gone to being extremely energetic, lean and fast. In fact you can see on the weekends when she takes a rest instead of doing her normal long run, she drops in fat percentage and puts on muscle as her body takes the chance to rebuild itself.

Anyway in short, I would imagine that you will ( and I will too ) have to be patient and smart from now on, when it comes to fitness.

Link to comment
Share on other sites
Greenling Newbie

Thanks, NoodleUnit, for your reply. I understand exactly what you mean about things flaring up again. I just had that happen in the last ten days, so I worry I'm overdoing it (but I don't seem to be doing that much). I know that rest is important (and I sleep long and well at night), but I'd be very interested in hearing more details about what your partner did with rest to improve her running. When you say she reduced her daily runs, did she shorten them or do fewer per week or both? What kinds of things does she focus on for each run (I'm assuming speed or distance) when she does workout? I'm guessing we're close to the same age (I'm 41, so I'm not getting any younger either).

It sounds like you have a really good mindset about patience and exercise--I'm working on that. ;) I'll remind myself to "exercise smartly", that's good advice.

Greenling

Link to comment
Share on other sites
NoodleUnit Apprentice

Hi Greenling

She reduced the number of runs she does per week from 5 to 3 and introduced the odd rest weekend where she does nothing ( about once a month ). In place of one of the missing runs she does a weights workout, but I think that's more to make her feel less lazy than actually to have any real effect ;). She does two shortish runs through the week ( 5 miles or so ) and then goes out for two hours or so on a Sunday - currently that 2 hour run is allowing her to cover 14.5 miles. Before she cut down on the runs, her pace was stuck at about 10 minutes per mile over a 2 hour run, she was constantly fatigued and frequently injured. It took a lot of persuading to get her to try cutting down on the number of runs but within two weeks of cutting down she was down in the 9 minute mile range and it;s kept on dropping. At the moment she's just focussing on distance really, although I guess her short runs are more focussed on speed.

I'd add that we have a fat percentage monitor on our scales and you can see on rest weekends that she drops fat but gains weight, meaning that she gains muscle. This happens every single time. she also gets a demonstrable speed boost the following week.

I have to say I'm both proud and envious of her. I was pretty accomplished as a runner and a field hockey player ( tried out for my nation when I was much younger ) in my day, but have struggled with fatigue and injury for years now. I have a fair idea that a lot of that was due to the celiac disease bubbling under and am fairly hopeful that as I recover I can regain a lot of my lost fitness. The irony is that I had been on the road back to fitness last year when I began to get really ill and all of this kicked off. My "work smart not hard" mindset is basically a result of many years of banging my head off a brick wall ;).

Link to comment
Share on other sites
Greenling Newbie

Hi NoodleUnit,

Thank you for the additional info--it helped me piece things together. In the past, I've had symptoms of "overtraining" (and that I now think were due to the Celiac). But this helps me put in perspective my need for "rest" days and gives me ideas on how to schedule my workouts. It sounds like your partner's running really improved (I'm jealous!) and, without hearing about her success, I would have been resistant to cutting back, but now I'm going to figure out a schedule and try it. I'm nowhere near running right now (and I miss it), but I'm thinking about trying 2 run/walk days that are shorter and a longer walk-only day for a couple of weeks. I'm hoping this will allow me to ease back into running, but not make me feel wiped out after a workout (what currently happens).

I'm still going to have to figure out what to do with weights, but baby steps....

As an aside, I talked to a dietician today (my Hy-Vee grocery store has one on-staff) about my crashes after working out mid-morning. She suggested eating 30 grams of protein for breakfast (much more than I have been doing!), due to the malabsorption issues that Celiacs have. So I thought I'd share that information with you. And then she told me not to push too hard. ;) So, maybe if I hear that message enough times, it will sink in. In the meantime, I took a rest day today and feel pretty darn good. I think six weeks of Gluten-free are finally starting to make a consistent difference (I've had 3 "good" days in a row).

Hope you're feeling better also! Thank you again for your post.

Greenling

Link to comment
Share on other sites
NoodleUnit Apprentice

Glad I can be of some help :). It's something I'm getting my head round round just now too, I think I'll probably do some upper body stuff next week ( my op last month means I can't really do cardio or lower body stuff yet ).

I have two problems at the moment - one is my grip as the neuropathy makes my right hand quite weak, which in turn makes holding weights quite hard, it's fading slowly though, so hopefully I can get back to it soon; the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me. In fact I'm considering trying a fairly energetic form of Tai Chi to see how that works. It's supposed to be quite good for neuro problems, helps with muscle control, relaxation and energy, which is what I need now.

As for running, I can't recommend the couch to 5k schedule highly enough. Before I got ill, I did it and it got me from nothing to running non-stop for 30 mins in about 9 weeks. Open Original Shared Link It's very well designed, only involves 3 runs a week and I would say that even if the early days feel easy, as they did for me, stick to the schedule, you'll be surprised how achy you are afterwards :)

Link to comment
Share on other sites
Greenling Newbie

I have two problems at the moment - one is my grip as the neuropathy makes my right hand quite weak, which in turn makes holding weights quite hard, it's fading slowly though, so hopefully I can get back to it soon; the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me. In fact I'm considering trying a fairly energetic form of Tai Chi to see how that works. It's supposed to be quite good for neuro problems, helps with muscle control, relaxation and energy, which is what I need now.

I am sorry to hear about the neuropathy as that has to be very frustrating. I was starting to have the very beginnings of that right before I went Gluten-free (I had no idea why my toes and fingers were randomly tingling). I hope that it continues to fade and your hands get back to normal. I think Tai Chi will be good exercise in many ways; I have a friend who takes a class and loves it for the peaceful concentration it gives her. I've promised myself to start stretching this weekend as a prelude to getting back to yoga for much the same reasons.

As for running, I can't recommend the couch to 5k schedule highly enough. Before I got ill, I did it and it got me from nothing to running non-stop for 30 mins in about 9 weeks. Open Original Shared Link It's very well designed, only involves 3 runs a week and I would say that even if the early days feel easy, as they did for me, stick to the schedule, you'll be surprised how achy you are afterwards :)

I'd heard of this program before, but hadn't really looked at it closely. I looked it over this morning and it seems very much like something I could manage at this point without being too much. So, bright and early Monday morning, I'm doing Day 1. I'll let you know how it goes.

Have a good, restful weekend!

Greenling

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Greenling Newbie

the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me.

I just realized that I didn't comment on this and it really spoke to me. One of the lessons I learned most strongly over the last ten years (while I had my chronic fever and other symptoms) was "how to be sick." On the bright side, I learned to self-care (good nutrition, lots of sleep, regular exercise as consistently as possible) in order to function while friends my age were ignoring their health. However, I also learned to be a bit of a hermit, and to live within the restrictions that I set for myself too easily. I no longer trust my body to respond well to change, challenges, or stress. So "softly, softly" is quite a good motto now for learning how to live "well". :)

Link to comment
Share on other sites
joej1 Apprentice

I have the same problem Greenling. I have had issues for the past 3 years with adrenal stuff. One thing i have learned is that you will overdo it sometimes. I have two things that i have learned.

1. Listen to your body and don't try to force it

2. When in doubt, always do a little less rather than a little more.

Link to comment
Share on other sites
Greenling Newbie

Thanks for the advice. I'm trying to listen to my body and not push so hard (I need to make #2 my mantra or stamp it on my forehead). This weekend has been much more successful in that respect. It's also helped to track the nutrients in my food and up my protein intake. Baby steps.... I'll figure this out slowly, but surely. Good luck to you--three years is a long time for recovery, but I hope it continues.

Link to comment
Share on other sites
joej1 Apprentice

Ah no, i have only been off of gluten for 5 months. I was sick for 3 years before i found out about it. =)

Link to comment
Share on other sites
Greenling Newbie

Ah no, i have only been off of gluten for 5 months. I was sick for 3 years before i found out about it. =)

Okay, that makes sense. :) Have your symptoms cleared up in those five months?

Link to comment
Share on other sites
GlutenGladi8or Apprentice

A few quick things my fellow gym-goers:

- Always stretch before lifting weights or exercising (whole body)

- Always stretch after lifting weights or exercising (whole body)

- Worry more about form and less about weight. Even if you have to use the bar by itself

- Take glucosamine for those joints

- Drink 80+ ounces of water a day

Link to comment
Share on other sites
NoodleUnit Apprentice

Very good advice, that. ^

I'm taking glucosamine for my joints anyway as I punished my body pretty hard when I was younger. Actually... there's a thing. I was told to stop running and playing hockey for a year when I was 16 because if I carried on I'd never run again. The cartilage in my knees was disintegrating and getting stuck between my knee joints. I wonder if the celiac disease had anything to do with that, all of 24 years ago...

@Greenling have you tried the c25K yet? I'm almost at the point of being allowed to exercise again, 5 weeks after my op. Keen to get started tbh.

Link to comment
Share on other sites
Greenling Newbie

@Greenling have you tried the c25K yet? I'm almost at the point of being allowed to exercise again, 5 weeks after my op. Keen to get started tbh.

Hi NoodleUnit,

I'm going to start the c25K on Monday. I decided to listen to my body and go softly (thank you for that advice!) and wait another week (while I cut out high-lactose products and upped my protein intake). My energy level has improved (yea!) and my GI problems have resolved (logging my food has been very helpful here). So I actually feel like exercising now. Nothing too harsh, but I think the c25K will be gentle enough for the first couple of weeks that I can feel my way. :)

I'm glad that you're going to get to start exercising soon. Are you still going to start with the Tai Chi? Keep me posted and I'll let you know how the c25K goes.

Greenling

Link to comment
Share on other sites
Greenling Newbie

Hi NoodleUnit,

Just thought I'd let you know that the first day of the C25K program went really well today. I even did a few weights and a lot of stretching afterwards. I stopped before I got too tired and feel great now (about 3 hours later). It was soooooo good to work out and ENJOY it.

So, thank you very much for giving me the link to the C25K!! :D Hope you're feeling better.

Greenling

Link to comment
Share on other sites
NoodleUnit Apprentice

That's brilliant news Greenling :D I remember being surprised at how much of a burn I got after even just that first run/walk day.

I've just started back at work after 6 weeks convalescence. We went for our usual lunchtime 30 minute walk and it nearly did me in ( I'm still having the neuropathy, which makes my right leg fatigue quickly, it's slowly going away though ). Seems I have a loooong way to go, lol.

Link to comment
Share on other sites
Greenling Newbie

Congratulations on being able to go back to work! And I hope that you enjoyed the walk and didn't suffer any ill effects the next day. Little by little....

I'm taking more rest days, so today I was "off" from exercise, but tomorrow I hope to be back at the gym.

Link to comment
Share on other sites
NoodleUnit Apprentice

How're you getting on Greenling? I did my first Tai Chi class on Sunday morning. Not sure about it if I'm honest but I'll give it a few more classes before I make a decision about it. To be fair, I did feel pretty stiff afterwards despite it being mostly very slow moving :)

I do like the idea, I'm hoping that the reality becomes a bit more satisfying soonish. I'm guessing knowing only one step so far is a large part of that feeling though. :)

Link to comment
Share on other sites
Greenling Newbie

How're you getting on Greenling? I did my first Tai Chi class on Sunday morning. Not sure about it if I'm honest but I'll give it a few more classes before I make a decision about it. To be fair, I did feel pretty stiff afterwards despite it being mostly very slow moving :)

I do like the idea, I'm hoping that the reality becomes a bit more satisfying soonish. I'm guessing knowing only one step so far is a large part of that feeling though. :)

I hope the Tai Chi class becomes more what you're hoping for, NoodleUnit. I've always been intrigued by the idea of it, but haven't gotten to try it. I think the mental concentration aspect of it would be good for quieting stress. Hope your muscles loosen up soon (but, hey, they must have gotten some kind of workout).

I'm in Week 2 of the c25k. I did too much on Monday, so I ended up taking three rest days. The run/walk was going so well for me that Monday I decided to finish out the 5K distance--big mistake. Lesson learned! ;) So I'm going back to the prescribed 20 minutes. I may have to stretch Week 2 out a bit--I'll see how tomorrow goes. But I'm making progress.... Slowly, slowly, right?

Link to comment
Share on other sites
NoodleUnit Apprentice

Exactly - just remember it's designed around the idea that you just repeat days/weeks if need be. I remember doing much the same as you early on. :)

Link to comment
Share on other sites
NoodleUnit Apprentice

That's me got the go ahead to start some gentle exercise... I'm stretching the meaning of gentle to encompass the C25K, I think :) Will probably start at the weekend... if I get a good night's sleep tonight, I may even go tomorrow. How quickly are you recovering from your runs Greenling?

Link to comment
Share on other sites
Greenling Newbie

That's great news, NoodleUnit! I'm so happy for you. :) Maybe we can work our way through the c25k together?? How's the Tai Chi coming along?

I ended up having to take 10 days off from running. I was starting to really search my diet to try and figure out what had brought back my fatigue, foggy head, apathy, etc., plus heat intolerance. Turns out my thyroid medicine was way too high (I have Graves' Disease, so my thyroid was removed two years ago). I've always had to take a megadose of the medicine because my body wouldn't consistently absorb (turns out that was the Celiac). So, now that I know what the problem is, I am overjoyed. Because this is the second time they've lowered my dose in the last two months (since I went Gluten-free), and if my body is absorbing it more efficiently, then I'm HEALING. :D So even though it makes me feel awful, it's a good sign of progress. Anyhow, I've been on the lower dose several days and I'm feeling better, so I went back to the gym this morning. The running was hard, but good. I'm travelling some this weekend and next week, so I'll be repeating Week 2 next week as well (and maybe for one more). But I'm getting there....

Hope your c25k attempts go well! Have a good weekend!

Greenling

Link to comment
Share on other sites
NoodleUnit Apprentice

Hi Greenling

Sorry to hear about having to take a 10 day break, it sounds as though you have it sussed though. :) It's amazing that you can track the healing process like that though. Very demonstrable effect of going gluten free. Have you been following Wimbledon? Interesting to learn that Djokovich went gluten free after health issues and his performance just went through the roof. He seems unstoppable now.

As for Tai Chi, I'm going to give it a miss just now. It's not explosive enough for me even when I'm still recuperating. Daft, I know, but I think I need to go back to it when I'm in my 70's or something. :) I'll be doing Day One on Monday providing I can avoid eating anything stupid over the next day or so. Will keep you posted.

Link to comment
Share on other sites
Greenling Newbie

Hi Greenling

Sorry to hear about having to take a 10 day break, it sounds as though you have it sussed though. :) It's amazing that you can track the healing process like that though. Very demonstrable effect of going gluten free. Have you been following Wimbledon? Interesting to learn that Djokovich went gluten free after health issues and his performance just went through the roof. He seems unstoppable now.

I did see that about Djokovich and it's quite amazing. I'm hoping the same happens to me. ;) I do have to say that the running I've been able to do is already faster than my best effort before (I was verrrry slow) and it's less effort (even starting back). So I do think there's a lot to be said for Gluten-free enhancing workouts (after a fashion).

As for Tai Chi, I'm going to give it a miss just now. It's not explosive enough for me even when I'm still recuperating. Daft, I know, but I think I need to go back to it when I'm in my 70's or something. :) I'll be doing Day One on Monday providing I can avoid eating anything stupid over the next day or so. Will keep you posted.

I can understand Tai Chi not being enough. I feel like I want to GO now that I'm getting better. I'll be re-doing Week 2 starting Wednesday (providing I don't mess up with food while travelling--I'm a little nervous about it). I'll look forward to hearing about your Week 1. Good luck!!

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,068
    • Most Online (within 30 mins)
      7,748

    DaciaDH
    Newest Member
    DaciaDH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...