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

What Changes Happen After Diagnosis?


happylittlemama

Recommended Posts

happylittlemama Rookie

I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?


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



Celiac.com Sponsor (A8-M):



glutenfr3309 Rookie

I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?

let's see, for me personally the biggest thing i noticed was that i could actually get out of bed in the morning!!

i was SO fatigued that sleeping 8 hours at night wasn't enough- i would wake up in the mornings feeling like i had not slept at all. because of the tiredness i had coffee every morning (just the one in the morning). now, i drink decaf because i don't need the caffeine and it doesn't go through me like regular coffee (i just like the taste and it's part of my morning ritual).

it also got to the point that i could FEEL the inflammation in my intestines. that area always hurt- that's how i described it to people- it literally felt like my intestines hurt! my waist went down 1/2 inch as well from that inflammation as did the inflammation on the rest of my body. for years my upper thighs on the sides were extremely sensitive- this has improved as well. i now have normal BMs. never had the D thank goodness but they definitely were not normal before.

i'm not irritable/depressed/anxious.

less headaches!

my skin complexion has improved. i look at photos around the time that i felt the worst and the dark circles under my eyes were horrendous. granted, they're still there, but my overall skin complexion looks better! several people have told me i look healthier now.

my skin isn't AS dry now and i have less of those weird random dry patches.

ravenwoodglass Mentor

The changes for the better, oh gosh, what can I say! My signature says a lot but the changes go so far beyond what is there. It was like a miracle. I became a different person. Part of that, of course, was not living in constant pain but I am just so much more relaxed in so many ways. It is like I am me again. When I first got hit with celiac in childhood my grandfather, who I didn't see often, said to my parents 'Where did my little sunshine go?' 40 some on years later she came back.

bluebonnet Explorer

i've haven't made a signature yet but i had just about every symptom ... gi, bloating, ataxia, bone and joint pain, insomnia, brain fog, numbness and tingling in arms, feet and legs, vit d deficient, unbelievably dry eyes, dh, hair loss, hypothyroid and just overall blah. i have seen improvement so far and most especially with my gi and dh. i have seen some improvement in the tingling/numbness, brain fog (can concentrate more easily & clearly)and definitely more energy. i'm starting to notice (just yesterday in fact!) that my leg feels stronger and don't give way like they used to and stronger grip. i've also noticed i'm not as anxious. i'm having more nights with longer sleep. for the past almost 14 years i've felt like a walking zombie with 4 or less hours a night. now i've had several days with atleast 6 or more restful hours and wow! that is huge!! i'm hoping my hair grows back in thicker. i miss my big hair. i still have bone and joint pain but i will say i'm starting to see improvement.

for me, with the exception of a few cc's i've been gluten free since january 10, 2010. and then i did a gluten challenge for about a month in may and gluten free again may 24, 2010. it messed up my progress but i'm back on track and feeling the difference!!! :):):) i am so grateful.

Tina B Apprentice

I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?

Once the severe iron deficiency anemia went away the energy was back up. No more mouth ulcers once a month, no more GI symptoms, bad indigestion, diarrhea, constipation. Hair quality improved and so did skin. A lot of the vague stuff like paper thin nails are all related to the malabsorbtion of nutrients, vitamins and minerals. Have not been anemic since I've been gluten free.

Skylark Collaborator

Let's see. I recovered from ... "Gastritis", "IBS", canker sores, borderline anemia, bipolar illness, and fatigue. My hair and nails are stronger too. Oh - I also used to get a rash on my hand that might be DH.

I might have missed something but my story is in my profile. :)

GlutenFreeManna Rising Star

-More energy!

-No more hair loss, and just last week my hubby commented that my hair was growing in darker (it's blonde, but had turned almost white). I have never colored my hair and I am 30 years old, but I was losing my hair and going grey/white.

-healthy nails that don't peel or break.

-skin is somewhat dry still, but fewer breakouts and no more rashes or hives.

-Less swelling in my hands and feet. I can where my wedding ring again and I have lovely ankles.

-no more fake pregnant belly bloat.

-more regular and lighter periods.

-ability to think clearly (most of the time :P )

-ability to read books again (and enjoy them) my short term memory had gotten so bad I would re-read a paragraph more than once trying to remember which line I had just read. Sounds weird, but I had this problem.

-ability to remember numbers has improved. Another strange one, but I noticed it today. I have never been able to recall numbers very well. I would always have to write down an address and look at it more than once on the way there, I wouldn't be able to memorize it. Today I had a list of addresses for several places I needed to go. I wrote them all down on a piece of paper and somehow I remembered them with only one glance. I didn't have to look at the numbers more than once while in the car. Perhaps this is just over-all memory improvement, but it seems like a miracle. My brain is working so well for the first time in years!

-No more asthma attacks

-No more anxiety attacks

-less depression/more happiness (today I could not stop singing, I was happy for no reason at all)

-strength in my hands and arms (I used to be too weak to even open a bottle of water. Now I can carry in all my heavy groceries and open my own jars and bottles)

-no more sinus infections

-fewer seasonal allergies

-weight loss of 20 lbs

-no more dry eyes (I can wear contacts again)

-healthier teeth and gums (still have gum disease, but my gums don't bleed as much as they used to)

-No more muscle pain/muscle cramps

-no more joint pain

-no more shaky hands (still happens if I get glutened though)


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.