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 Our Content
    eNewsletter
    Donate

Newly Diagnosed - Another Question

AmandaD

By AmandaD
in Coping with Celiac Disease

Recommended Posts

AmandaD Community Regular
AmandaD
Posted

Hi - AmandaD again in Wisconsin. I have never had a lot of celiac-type symptoms (just minor "upset tummy" situation) and I'm wondering how I'll feel as I begin the gluten-free diet. Is it an amazing transition? Do things get worse before they get better? Is there an adjustment period?

Any advice would be much appreciated. Many thanks. :D

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Everyone varies with time it takes to feel better. I felt alot better after 3 months but was not back to normal until about 8 months. Some people feel better really soon after being gluten free and with others it takes longer. It depends on the amount of damage done and other factors. Don't expect immediate results though because your body needs time to heal.

AmandaD Community Regular
AmandaD
Posted
  • Author

Kaiti - This is such a silly question ... but will I really "heal"? This whole condition is so odd to me. Does the villi actually normalize again? My great aunt who was diagnosed about 7 years ago said it was a matter of weeks and she - who'd had a severe case of anemia - actually gained weight and the doctor was happy.

I've started eating gluten free this weekend (an amazing amount of cooking...tonite we've having meatloaf)...it's been an adventure, that's for sure.

Everyone varies with time it takes to feel better. I felt alot better after 3 months but was not back to normal until about 8 months. Some people feel better really soon after being gluten free and with others it takes longer. It depends on the amount of damage done and other factors. Don't expect immediate results though because your body needs time to heal.

<{POST_SNAPBACK}>

KaitiUSA Enthusiast
KaitiUSA
Posted

Yep, all the villi get back to normal again in almost all cases.

Very rarely people have refractory celiac disease where there is irreversible damage.

Damage does take time to heal though...people can see improvement quick but for some it takes longer.

DylansMom Rookie
DylansMom
Posted

This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

AmandaD Community Regular
AmandaD
Posted
  • Author

Jennifer - Thanks so much for that info. Fun being a mom, isn't it? I've got three little ones under the age of 5 and I'm seriously considering having them tested (although they don't seem to be symptomatic yet).

Boy, I bet it was empowering finding out what he had and knowing you can actually do something about it.

You used the word "foreign" - that's exactly how it feels. Unbelievably foreign to me. Erg!

This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

<{POST_SNAPBACK}>

hilaryw Newbie
hilaryw
Posted
This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

<{POST_SNAPBACK}>

We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too? Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi. Thanks. Allie is 4.

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

<{POST_SNAPBACK}>

I definately wouldn't be worried about a wrong diagnosis if you've got both tests coming back positive. Pos. bloodwork + pos. biopsy = Celiac.

KaitiUSA Enthusiast
KaitiUSA
Posted
We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too?  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

<{POST_SNAPBACK}>

You should definitely not be worried about a misdiagnosis in that case. She clearly has celiac.

And a colonoscopy would not be to detect celiac...those are done to detect other things but not celiac.

robertlastine Newbie
robertlastine
Posted
Hi - AmandaD again in Wisconsin. I have never had a lot of celiac-type symptoms (just minor "upset tummy" situation) and I'm wondering how I'll feel as I begin the gluten-free diet. Is it an amazing transition? Do things get worse before they get better? Is there an adjustment period?

Any advice would be much appreciated. Many thanks. :D

<{POST_SNAPBACK}>

From what I have been able to tell, you will notice a change in 3 to 6 DAYS. It is incredible. I too was just diagnosed and found out that what I had grown accustomed too I didn't have to settle for. Now life is looking up. Instead of looking at what I can't eat I look at what I can eat and how it will improve my life. It might be a psychological game I am playing with myself but any cheating will only hurt ones self. Stick to the diet. B)

KaitiUSA Enthusiast
KaitiUSA
Posted
From what I have been able to tell, you will notice a change in 3 to 6 DAYS.  It is incredible.  I too was just diagnosed and found out that what I had grown accustomed too I didn't have to settle for.  Now life is looking up.  Instead of looking at what I can't eat I look at what I can eat and how it will improve my life.  It might be a psychological game I am playing with myself but any cheating will only hurt ones self.  Stick to the diet. B)

<{POST_SNAPBACK}>

Some people may see a difference that quick but I have not found many who feel better so quick. Don't expect to feel better so soon but if you do then count your blessings.

DylansMom Rookie
DylansMom
Posted
We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too?  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

<{POST_SNAPBACK}>

In my son Dylan's case he had the colonoscopy ONLY because blood was found in his stool. We went ahead and had it done at the same time for 2 reasons...A) I have thought there was something "off" in Dylan for years...he had an enormous belly. Basically he looked liked an Ethiopian child who was malnourished, but the Dr's kept telling me "No no he is just small it has to 'go' somewhere' , so I figured the more we find out the better and B) because if Dylan had to go to the hospital for this and then later have to go again he would be even more worried because he would have some idea of what to expect. This way we got it all done at one time and hoped it would be the better idea. Thankfully the colonoscopy was clear and fine.

The colonoscopy was not directly related to Celiac.

Cindy Chabot Newbie
Cindy Chabot
Posted

Hi

I am new to this disease as well. Both my son and I were diagnosed with it in June. We thought we were eating gluten free until we met with a dietician, she really helped us. We have been gluten-free since August 4, although I think I've been glutened in some restaurants. I also had a colonoscopy to rule out any other problems. I have been doing a lot of my own baking, thank goodness I like to bake. There is a store about an hour away from where I live and the own has celiac disease, so everything in the store is gluten-free. He makes a great celiac flour that you can substitute into almost any recipe. I have felt quite depressed since our diagnosis but I hope this will pass. The worst symptom for my right now is the fatigue. I had the summer off, but I am back to teaching so I hope I have the energy.

familee3 Newbie
familee3
Posted

My 4(almost 5)-year-old daughter was diagnosed last Friday. I started her on a gluten-free diet that day. I am overwhelmed and concerned about my husband and myself. I had the blood screening test done yesterday and am waiting for my results. The Dr. said we will have to schedule the scope if my test comes back positive, but I don't see the point. We only have one child and have already changed the diet for the three of us now. A positive on the bloodwork just tells me that I can't cheat when I do lunch on my own and I figure I'll be healthier anyway.

As with many others, my daughter had no symptoms other than being small. She's well below the 3rd percentile in size. She's about average for a 3-year-old now. I am so hopeful that with this diet she will begin to grow more and at least be closer to "normal" size when she starts Kindergarten next year. School is hard enough without being picked on for being small.

I am so greatful for this website and for those willing to put their experience out there for the rest of us to learn from. I can't imagine how lost I'd feel without having this lifeline.

Please keep up the lines of communication!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,180
    • Most Online (within 30 mins)
      7,748
    Ruby B
    Newest Member
    Ruby B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...