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I Have Good News Regarding My Plight

UnhappyCoeliac

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UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted

Hello! If anyone remembers this thread:

https://www.celiac.com/gluten-free/index.ph...mp;#entry519602

I was not only Unhappycoeliac but angry one to. Anyone after reaching my wits end of the 'am i doing good' and im i doing bad scenario I vowed to get a blood test. Which I did and I got the results just now and basically everything is healed on well on the way

B12.VitD, folate, thyroid function,calcium, other stuff I have no idea about

Where all basically stuffed as of July last year when I was diagnosed.

I can happily report these are all now normal and I am pumped. My doctor was quite happy and mentioned it shows I had been making an effort I am effectively nutritionally healed of this disease and continuation of the gluten free diet will see the anti bodies go down.

That is the bad the anti bodies where both over 130 at diagnosis and now one is

40 and is 53. They both however need to be under 20.

I am very happy I am healed and most definitely continuing a gluten free diet.

For the battlers out there I have struggled immensely i love food, i suck at controlling temptation and in social situations and other situations I have simply given in. The important thing is getting back on the horse though.

I have maybe had gluten up to 5-8 times (minuscule amounts) in the last 3 months but have managed to recover nutritionally. Once the belt is tightened I will also get the anti bodies down.

Anyone I also coined up my new motto while passing time in the doctors surgery and that is

"if Nutritionally sound coeliac represents just a diet, if not it is a disease"

Anyway all of my 70 or so posts have been mostly getting help and being angry so im glad to post some good news. I think everyone here is really tolerant and i appreciate the mods always moving around my threads and stuff :)

My doctors words on my stuff ups where 'the blood test represent mostly an adheral to the gluten free diet over a long period of time.

And it hasn't been that long even 3 mths ago I was still in shambles not even knowing lollies etc had gluten and actively eating them. Done ranting now I am really pleased. In 3 mths i go back for another test.

I ironically two of my liver enzymes are above what they should be and I have to get a cholesterol test that is the bad news to much fatty diet the doctor suspects

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mushroom Proficient
mushroom
Posted

Good for you! You *sound* ever so much better. We will always be here to keep you on track :blink:

ravenwoodglass Mentor
ravenwoodglass
Posted

This is great news!!!!!! I am so glad things are looking up for you and that you have been able to get a good amount of healing in a short time. Don't go dropping those supplements yet though. :)

flourgirl Apprentice
flourgirl
Posted

This is good news!!! So glad you have something positive to feel good about, a reward for you efforts. It makes it easier to do what you need to do when you can see some results. There is always someone here for you.....which I'm sure you've discovered. Some of us read along, answer sometimes, but not always. Wish you great luck in your continuing efforts.... :)

ang1e0251 Contributor
ang1e0251
Posted

That is great news! You might not know but I think about those who are struggling. I'm always sending prayers your way and hoping that you are working your way toward good health. I'm so glad to hear of your improvement. Kudos!

RiceGuy Collaborator
RiceGuy
Posted

So glad you're doing better! That is wonderful news, and your encouraging words will help others who also struggle.

UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted
  • Author

Yeh i am getting the hang of it need to get more fruit and vegs in my diet though.

If i understand right alot of the probs with coeliac is due to nutritional deficiency which I no longer have so I am good about this.

Positive I only had celiac for 2-5 mths before diagnosis too at 21. So im in good set if I am still kicing at 80 this will be easier to managae i guess.

There is a vaccine in stage 3 process at the Melbourne hospital atm things will get better in 20 yrs or so i hope

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GottaSki Mentor
GottaSki
Posted

That is wonderful news...thanks for sharing!

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Good for you! Keep up the good work! I think it's normal to be angry for a time about this. I mean, it's not fair, is it? And it's all up to us to eat right but the world makes it so hard to do a good job at staying gluten-free. I used to get angry at myself for accidental glutenings, but I think I'm starting to accept that I'll have no control over it sometimes and, despite my best efforts, it's still going to happen on occasion.

DakotaRN Newbie
DakotaRN
Posted

I'm happy for you. Good job!!! :D

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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