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

How Long Does It Take To Feel Better?


Wapondi

Recommended Posts

Wapondi Newbie

Hi. I was just diagnosed with celiac (endoscopy) and have been gluten free for almost a month now. I still don't feel any better. How long should it take to start seeing an improvement?

Also, my migraines have gotten really out of control in the last couple of weeks. My chiropractor thinks that my body is detoxing and kind of freaking out. What are everyone else's opinions?

I'm so glad I found this website.

Thanks!

Christina


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



Celiac.com Sponsor (A8-M):



PinkZebra Rookie

I also have just been officially diagnosed with Celiac via blood test. I have had stomach aches, cramps, and irregular digestion for longer than I can remember; at least 5 years if not more. I have had 3 miscarriages and wonder if they were related to undiagnosed celiac. I have read cookbooks on what to eat, I have read lists of those hidden ingredients to avoid that whisper gluten as opposed to the ingredients that shout gluten, I am not shy at a restaurant and I my blackberry is my best friend when it is lunch time and I am out an about and it is meal time and I am 45 minutes away from home. My doctor originally verbally diagnosed me with Candida. My take on that was that it was an attempt to just give up everything that "might" bother me in an attempt to find out if food was the issue. I started my quest to find out for sure then. Candida, as it was presented to me, dictates avoiding....well it is easier to list what you can eat: fresh flesh meat, vegetables (only fresh, avoid any deteriorating parts-browning, decay etc), one cup of beans a day or less, and nuts (but not peanuts as they are technically a legume, not a nut.) I dropped almost 10 pounds in a week. I didn't really feel "better" per se, but my headaches lessened and my digestion seemed to be a better experience. I had sort of "forgotten" (accidentally on purpose) that I was not supposed to have dairy or coffee, and continued to have my venti latte with skim milk every morning. I didn't seem to have any affects from that. So, I researched which ice creams are gluten free and my local Baskin Robbins had a patron back. Fruit was the last bastion and when that fell, I was convinced (after having a banana for breakfast again) that it must be the gluten/celiac. 3 weeks ago I asked the doctor to "do the test." 3 weeks and 3 days of phone tag, I received my results: yes, you have celiac. My grandmother had it and her uncle had it (but he was undiagnosed.) My grandmother lived into her 90's and she was diagnosed about 10 - 15 years prior to her death. I remember making her gluten free chocolate chip cookies her 90th birthday. She was ecstatic.

Well, now it is my turn, and my grandmother is gone so I cannot get any tips, hints, or answers from her. My biggest question is; HOW LONG DOES IT TAKE TO FEEL BETTER?

I don't see to feel "bad" after eating something. I get feverish after the digestive process is over and I release the waste. It is not every time and this biological process is still not regular. Is this normal? It is so bad all I can do is curl up into a fetal position and moan. My gut gets distended like the malnourished children they show on TV and I have almost a 100 degree temperature. This last for anywhere from 24 to 48 hours, then it is gone and I am back to my "normal." I have noticed that this happens after eating particularly spicy foods ~ 3 days later or highly acid foods~any where from 1 to 3 days later. Now, I have experienced the "right after eating it" misery. My husband, shortly after being told that I might have Candida, made dinner for us. It included a pre-marinated chicken breast. OOOOh, not good. 1 hour after eating it I was out for the count. We had 3 more in the freezer; I gave them away the next weekend to my parents for them to enjoy.

I really would love to know when, how, why, what to expect now. I want gory details; I want to hear what people have experienced to match them with mine. Will I have to keep curling up in bed for months, years? How long?

boysmom Explorer

Wapondi, do a search here for gluten withdrawl. I did not personally experience it, but what you're dealing with sounds like a lot of what I've read others describe.

Pink Zebra, you mention spicy and acidic foods. Do you keep a food diary? Once I had the gluten out of my system I discovered that I also have an intolerance (which I am PRAYING is temporary) to nightshade vegetables. My worst reaction was to eggplant, but that's not something I use often anyway, but potatoes are almost as bad as a gluten reaction, and tomatoes and peppers are similar but weaker reactions. Because you mentioned spicy and acidic I just wondered whether it might be a nightshade intolerance causing your current reaction.

I don't usually have a fever, but the 3-4 day delay for the worst of it sounds familiar. I will have small reactions within an hour or two of eating (sore joints, feeling slightly off balance, vision out of focus) but the more severe digestive symptoms such as bloating, gas, and diarrhea may take a few days to develop. For me, once those show up I'm almost through it and usually within a day or so I will have a massive bowel movement and then start to feel better again. I know others have said their reaction can last a week or two, so maybe it all depends on how sluggish your system is.

The good news is that it does get better. I've been gluten-free for 10 mos now and only make mistakes rarely instead of once or twice a week like it was at the beginning. I think my lingering tiredness is due to being anemic (and having some trouble finding an iron supplement that doesn't upset my stomach), but even taking it less often than I should I do seem to be getting some benefit and am starting to perk up again. :)

PinkZebra Rookie

Wapondi, do a search here for gluten withdrawl. I did not personally experience it, but what you're dealing with sounds like a lot of what I've read others describe.

Pink Zebra, you mention spicy and acidic foods. Do you keep a food diary? Once I had the gluten out of my system I discovered that I also have an intolerance (which I am PRAYING is temporary) to nightshade vegetables. My worst reaction was to eggplant, but that's not something I use often anyway, but potatoes are almost as bad as a gluten reaction, and tomatoes and peppers are similar but weaker reactions. Because you mentioned spicy and acidic I just wondered whether it might be a nightshade intolerance causing your current reaction.

I don't usually have a fever, but the 3-4 day delay for the worst of it sounds familiar. I will have small reactions within an hour or two of eating (sore joints, feeling slightly off balance, vision out of focus) but the more severe digestive symptoms such as bloating, gas, and diarrhea may take a few days to develop. For me, once those show up I'm almost through it and usually within a day or so I will have a massive bowel movement and then start to feel better again. I know others have said their reaction can last a week or two, so maybe it all depends on how sluggish your system is.

The good news is that it does get better. I've been gluten-free for 10 mos now and only make mistakes rarely instead of once or twice a week like it was at the beginning. I think my lingering tiredness is due to being anemic (and having some trouble finding an iron supplement that doesn't upset my stomach), but even taking it less often than I should I do seem to be getting some benefit and am starting to perk up again. :)

Nightshades. I have heard of that before, but I guess I need to do some more research. thanks for the lead and a possible direction to go in.

  • 3 weeks later...
PinkZebra Rookie

Thanks for the head's up on the Nightshades. I have found that tomatoes, peppers both sweet and spicy, and some potato products do "mess" me up. Potatoes, not so much. I found a website that listed the amount of the ingredient/component in the night shade family that interacts with people and the potato had the lowest amount. Eggplant, I believe was at the top of the list, and I don't eat those anyway so that was good. Tomatoes and Peppers (both hot and sweet) are some of my favorite things so I am learning to use other things in my salads like cooked then cooled asparagus, yellow carrots, different types of cucumbers, and jicama. For a good filling meal, I take cooked chicken chopped up and throw it on top of all the cold fresh veggies and call it lunch with some home made dressing.

But, now I have another question. I had some strawberries this morning. My "stomach" (intestinal area) started to feel the same way as after eating nightshades. They aren't listed as night shades but after reading some posts from different websites some people have a reaction due to them being grown in wheat straw, but other say that should not affect it. This was the first time I have eaten them plain and felt icky; I usually have them with oranges and bananas in a fruit salad as breakfast.

Anyone any have a reaction to Strawberries?

Thanks!!

masterjen Explorer

Hi. I was just diagnosed with celiac (endoscopy) and have been gluten free for almost a month now. I still don't feel any better. How long should it take to start seeing an improvement?

Also, my migraines have gotten really out of control in the last couple of weeks. My chiropractor thinks that my body is detoxing and kind of freaking out. What are everyone else's opinions?

I'm so glad I found this website.

Thanks!

Christina

I, too, am very thankful I discovered this website. I think it should be recommended to any newly-diagnosed celiac. Anyways, I was dagnosed (and went gluten free) 2 months ago, and like you still have symptoms (rib/intestinal discomfort, bouts of muscle weakness, low-grade headaches, twitching muscles, low energy, and difficulty concentrating). I, too, had frequent and intense migraines for 6 weeks after going gluten-free, and I'd never even had a headache before in my life! Now 2 weeks without a migraine and counting . . .(lol). Because of the lingering symptoms, I decided to go lectin-free (which includes beans/lentils, grains, milk, eggs and nightshades) about 2 weeks ago, and I have been slowly (a new one every week) adding in one of those foods (or a single food from the food group) back in. I've since added back milk (lactose-free, to be safe) and eggs, and now I'm adding in rice. I'm keeping a food diary through all this, and my hope is that I'll have an "ah-ha! moment" where I can identify the culprit that is causing the lingering symptoms (such as by my noticing an increase in severity of symptoms (or diarrhea or something else obvious) after ingesting a particular food after a few days (no luck so far :( ). It's a "stab in the dark", as they say, but I will try anything to get better! BTW - I'm also eating only whole/pure foods (nothing processed, no sauces, etc. even if they are "gluten-free"), and I think this can't hurt either ;)

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.