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 Did It Take For You To Feel Completely Healed/normal Again?


ChristianGrey

Recommended Posts

ChristianGrey Rookie

Hello everyone -

I have been gluten-free for approximately 9 months. I have been very hard on myself when it comes to my special dietary concerns. Aside from the social ineptness - in relation to socializing when it comes to gathering over food and drinks- i think I manage pretty well. I'm sure I've been CC over the course of 9 months; but obviously it was unintentional. I am still in a significant amount of intestinal pain - above bellybutton and slightly to the left a few inches from navel - which concerns me about possible pancreatitis.

Aside from all that - I generally feel pretty horrible 3-4 days out of the week. How much longer should I expect this? How long did it take you to feel normal again?


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



Celiac.com Sponsor (A8-M):



gfreejz Rookie

Hi I have been gluten-free about 1.5 years. Long story short - its been a long road. I've been lactose free about 3 months. I didn't realize how much a little dairy would set me back. I thought a little was ok. At first I could not tell the difference in reactions between lactose and gluten. Now I know lactose makes me feel like a burning sensation starting under my stomach and burning all the way out. Butter is really bad this way and the gas, wow. And i have found that any lactose builds up in about a weeks time so I can eat a little and be ok but only about once a week. Olive oil is amazing, at first i could feel a soothing sensation when eating it, it was so opposite of any other oil or butter. I use smart balance spread ( mostly olive oil) now and evoo to fry. That has helped alot. Also I might add that I am very sensitive to CC and I am getting to the point of fewer than 1 reaction per month.

so that brings me to this last month. I got dehydrated pretty bad and decided to gave up caffeine. So now I am drinking about 200 ounces of filtered water a day( I add two teaspoons of sugar and a shake of salt to 32ounces)

Three weeks ago I started ultimate Flora probiotics with 5 billion cultures. That is the strongest I've ever taken. So u decided to take two a day for a week then one a day. The first day It felt like I got punched in gut so the next morning i took one then one at nite. I was having some massive BM's that were pale yellow and left me feeling a little

Weak and empty and like I was ran over. So by the end of week I needed a break so I didn't take any for two days. Then I started feeling queasy and started faithfully taking one a day. Since then I've felt better than I can ever remember! I don't feel queasy at all, my stomach feels like nothing! This must be normal. I feel like I got someone else's stomach now. No feeling like vomiting or feeling like u gotta go number two all the time.

Good luck to you! I hope my rambling is helpful to you!

MitziG Enthusiast

I don't know that I will ever feel "completely healed." But at 1 year I really felt like I was mostly there- that was a big turning point for me. When you have had celiacs your whole life, it is hard to measure what feeling 'normal' is! I know a year and half of being gluten-free has made me feel pretty darn good most days though!

Newbee Contributor

I've been gluten free for 13 1/2 months and still have a lot of problems. Doctors have not been helpful so trying to figure out on my own what else to do which is frustrating. They say a lot of people who continue to have problems is due to other food intolerances. I started following the SCD diet which I think has helped but having trouble sticking with as it is so restrictive. Has your GI doc been of any help to you? Mine gave me a strong dose of antibiotics for possible bacterial overgrowth which seemed to help but only for a few weeks. Tried prescription digestive enzymes too without being able to tell if they were working. Lots of trial and error. Good luck to you! I know how truely frustrating it is!

IrishHeart Veteran

Mine gave me a strong dose of antibiotics for possible bacterial overgrowth which seemed to help but only for a few weeks.

I suggest you take PROBIOTICS after strong doses of antibiotics to replenish the beneficial bacteria in your gut.

Doctors are quick to prescribe the anti-Bs for "possible" anything (I mean, did he even test you or just guess??) but they fail to suggest the PRO-Bs and it can wreak havoc in your GI tract.

Been there/done that.

Just a suggestion. Hope you feel better soon.

Finally-45 Contributor

You may have multiple problems, try reading the posts on the forums for people with other food sensitivities.

(If it's true, try not to scream as loud as I did! You can scare people like that.)

GFinDC Veteran

You may have multiple problems, try reading the posts on the forums for people with other food sensitivities.

(If it's true, try not to scream as loud as I did! You can scare people like that.)

Ha ha, that made me laugh! :D

@Christian,

You won't get better until you get rid of the foods or other things you are taking in that are making you sick. The immune system reaction takes a couple weeks to cool down, so if you are getting cc every week it is never going to stop. If there are other food intolerances then an elimination diet is the way to go. But first thing is to make sure you are not getting little bits of gluten without realizing it, which is a very easy thing to happen. Check all your vitamins and meds again, and if you aren't sure about them stop taking them for a little while and see if it makes a difference. if you are drinking alcohol stop that for a while also and see if it helps. Soy is another big intolerance issue for many of us. Nightshades also, and some have problems with oats and corn.

It's kind of like a detective hunt finding the problem foods. but if you take your time you can do it.


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



Celiac.com Sponsor (A8-M):



Archived

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

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

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • 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!!! 
×
×
  • 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.