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

Finally I Have The Answer

Guest chickadee

By Guest chickadee
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest chickadee
Guest chickadee
Posted

:rolleyes: Hi, my name is Brenda, My 10 year old son and I have been diagnosed for 2 years :D

It was a long long road. I had all the misdiagnosis, IBS, uterus removed because of low iron, water retention pills because of swelling in the feet and hands, put on paxil for depression, Glucose intollerant, sugars would fluctuate 4-13 but always down to 7.2 before the 2 hours. I was extremely fatiqued all the time. I could get up in the morning and then after several hours of normal daily activities I would need to go to sleep. I was not able to do a 6 hour day at all. Working was out of the question. I started to have problems with irregular heart beats, burning in my chest, pressure in my chest and after 3 outpatient visits with them telling me that it was not my heart I decided that I needed te go beyond my family doctor and demand!!!! :angry: to see a specialist concerning my bowel issue. He finally said yes after much pestering. The specialist listened to me for 1 hour go on and on and on with every symptom I ever had up to that day and then she finally said you have CELIAC and I said What Is That ? :huh: When she was done with me I knew also that she was right. I told her that I had eliminated any products that had whole wheat listed on the lable because of my own discomfort when I ate these foods At this point I had been doing this for 4 years.She said that would interfere with my biopsy results concerning a celiac disease diagnosis and wanted me to go back to eating everything on the list she gave to me. I tried for three months to eat all the things on the list but I know that I never ate them enough bcause it was just to uncomfortable and painful when I did. The blood work was negative and when she did the biopsy it to came back negative but she saw so much damage to my villi that she did the biopsy again. It was negative as well. After this she said that she was convinced that I had celiac because of the damage to my villi and my own testimony, and that if going gluten free eliminated my symptoms then Celiac Disease would be the diagnosis Then I tlod her about my son having three or more boughts with diarrhea a day and his complaints of stomach, abdomen, leg and back pain. She said that he would need to go the the sick kids hospital for confirmation of diagnosis.

my son and I went on the gluten free diet and within weeks I knew for sure that she was right. There were times in the first year that I tried to eat gluten products but the gas, bloating, diarrhea, fatique etc..:rolleyes: from those experiments were so severe that I have been convinced beyond any doubt that I am a celiac and that even if I did want to eat anything I like, it would never be possible. You could never pay my son enogh money to deliberatly eat any of the forbidden foods because like me he has immediate results.

I hope this helps others who, like me, have no positive biopsy but have all the symptoms. I am a new person since going gluten free. I am symptom free (except when I accidently ;)^_^ contaminate myself, I look like I'm 9 months pregnant)

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

I'm glad you have an answer! Welcome to the board, post often!

Guest Viola
Guest Viola
Posted

Welcome Brenda, many of your symtoms are familiar to a lot of us. I too had a total hysterectomy because of bleeding 3 weeks out of every month :o It would not have happened if I had of been diagnosed earlier. Of course one needs vitamin K for the blood to clot and I wasn't getting any. Or any iron or other vitamins or minerals either.

This is a great group to be around, so stick with us :)

ianm Apprentice
ianm
Posted

Welcome. I don't have a formal diagnosis but it is quite obvious that gluten was the thing that made me so sick. I won't get a formal diagnosis because I refuse to eat anymore gluten. The disruption to my life would be too great that it is just not worth it. I've learned a lot from this group and hope you do too.

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board :D This is a great site for support and for any questions you have

mela14 Enthusiast
mela14
Posted

i also had a hsyterectomy...but i think the problem was gluten long before. if i knew then what I know now!

I'm glad that you are feeling better. I am waiting for my biopsy results. An and still not feeling better.......but don't think they will show anything. i had the biopsy done 4 months after going gluten-free. I am also waiting for the DNA results. either way I am not going to eat gluten again....I still have to work on my diet as i have so many other typical food allergies. probably because it took so long to figure out about the gluten.

Guest BellyTimber
Guest BellyTimber
Posted

1. How come she can see flattened villi if the biopsy is "negative"?

2. I'm in the same position as Ian but it means I can't get a doctor's letter to my employers to explain absences, also I seem to be one of those that's taking a few years to bounce back (I hope).

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

Celiac.com Sponsor (A8-M):


Guest chickadee
Guest chickadee
Posted

I'm assuming that the villi were starting to get healthy because I was only eating foods that did not say wheat or whole wheat on the label. Also I was making alot of our meals. Potatoe, rice, meat and veggies. We were not eating processed foods. For what ever reason she was amazed that the biopsy came back negative when she could clearly see there was damage and did the second one because the first one came back negative.

:)

Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Brenda:

There are a lot of great people on the board. You will find much useful information.

mela14 Enthusiast
mela14
Posted

got all my results.

dr says the good news is that i don't have celiac!

the biopsy and gene test were negative.

the biopsy looked good.....i had already been gluten-free for 4 months

she said that i could just have an intolerance.....but will never be celiac because i don't have the gene...

in any event i still feel poorly and am bothered by so many foods. so with the test or without it i have to really work on my diet.

nuts, soy, eggs, wheat, dairy and potatoes are all off limits as they make me so sick.

not sure how this all happened but i am so tired of not feeling well after i eat. it makes me sick for days.

right now it feels liek i got the flu.........everythig hurts....gut to muscles.

soy started it and then cashews finished me off. at least i din't have gluten...oh well

here we go again

plantime Contributor
plantime
Posted

{{{hugs, Mel}}} :wub::wub: to feel better soon!

Rikki Tikki Explorer
Rikki Tikki
Posted

Oh Mel:

I know how awful that feeling is! I hope you get your answer soon and that you feel better sooner!

Sally

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.