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Is This A Fluke Or Are We Really Seeing Results Already?

girlfromclare

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girlfromclare Apprentice
girlfromclare
Posted

Well technically its been two weeks but I dont think the first week can count as we made so many mistakes and unwittingly gave our son food with gluten - and I expect we will make lots more mistakes too... but since going gluten free (strictly) about five days ago, things have changed in our house and I dont know whether its a fluke or not! I really only started noticing the changes in his behaviour during the last two days more so... he's waking up happy... he's playing happily... everything isnt a problem... which is rare! He didnt have gastro issues but then he hasnt had dairy in his system for almost two years now and while he was having dairy, he had a lot of gastro issues. However, his mood swings have almost compleletly settled down! Is it possible to see results so quickly??? He tested negative for celiac and the doctor seemed pretty sure that meant he didnt have it.... but I am so sure that this is a positive and fast result... I know that if this is an indication of what life will be like in the future then I will be perfectly content to spend my days baking bread and rummaging through health food shops.. .and spending a goddamn fortune!!... I posted a few days ago about how I had spent hours crying recently... I had such a bout of the 'are we doing the right thing?' blues... and now I really believe that 'yes we are!!! I'll keep you all posted on his progress but if this is not a coincidence, then I am seriously impressed (and a lot more relaxed!)

Thanks for everything everyone... thanks for the advice...

Liz in Ireland.

x x

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kbtoyssni Contributor
kbtoyssni
Posted

You're definitely seeing results! Congrats! I also had positive results within a few days. I had a few setbacks and it was probably 6-9 months before I was 100% again, but the immediate results made it so much easier to continue with the diet. From your positive dietary response, I'd say your son definitely has celiac disease.

FeedIndy Contributor
FeedIndy
Posted

I noticed a difference in DD's disposition and energy levels within 2 days! I thought I was just seeing things until we weighed her at day 5 and found she had already gained 5 ounces after losing 2 ounces the month before. She's a completely different and very happy baby now! When I get sad about what she may be missing out on as she's older (like pizza night the other day!) I just remember when she was teeny and lethargic, look at her now and know we are doing the right thing!

celiacgirls Apprentice
celiacgirls
Posted

I saw results in myself and my daughter in a few days. We didn't have any stomach issues to begin with but our moods and her behaviour improved dramatically. Our house is a different place now than it was 6 months ago as far as our family life. Some days I feel sorry for my kids but mostly I am just glad we know what was causing their problems. After more than 6 months, it still seems hard to believe that the answer was so "simple". Like you, I am glad to spend time cooking and baking to keep it up.

vampella Contributor
vampella
Posted

I also saw these changes with in a few day's with my DD and about a week, we had NORMAl bowel movements and still are 1 1/2 months into. My dd also had a neg blood test, 2 actually but her doctor know's she's a celiac kid!!

Congrats, I am glad you are seeing improvment!!!

Guest nini
Guest nini
Posted

yep we saw results in my daughter that fast and she was having behavioral issues prior to going gluten-free... I'm telling ya, the tantrums were uncontrollable and frightening and would come on about an hour after eating and would last about an hour with her kicking, screaming, biting, thrashing around on the floor, not wanting to be held at all and on and on... it would pass just as quickly as it would come on and she would lay in a heap on the floor sweaty and sobbing and saying "sorry mommy, I couldn't help it"... I'm SO GLAD we found out that gluten was the problem. One of the first indications to me that she's been accidentally glutened is when her attitude takes a major downturn and then the tummy starts hurting and she begs for some pepto bismol...

Lymetoo Contributor
Lymetoo
Posted

I felt better in one week!

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Ursa Major Collaborator
Ursa Major
Posted

I noticed amazing changes within a day! It is definitely not a fluke, that is fantastic, you must be so happy!

Nic Collaborator
Nic
Posted

My father saw results that quickly too. Within the first week his D had stopped. My son's symptom was constipation so I took longer to see any change. I think that is a harder problem to turn around. We still have issues but my father swears he felt much better within that first week.

Nicole

taweavmo3 Enthusiast
taweavmo3
Posted

Yep, we saw results that fast too......it is truly one of the best feelings in the world, to see your child become happy again. You don't realize how much you lost until they start to become the children they should have been all along. I will never forget how thrilled we were those first few weeks!

Congratulations to you....and I hope things just continue to improve!

girlfromclare Apprentice
girlfromclare
Posted
  • Author

Thank you everyone. Wow... i definitely feel we are on the right track... I am so glad that you all so improvements so quickly too... so I know this isnt a fluke. Nini, our experience with the tantrums is exactly the same... exactly!!! And then afterwards the pain in the tummy... oh boy we've had it for so long now that they were a daily occurence for the past four years and that alone would drain every ounce of energy from you... I can truly empathise... and now they have stopped we are so relieved and happy. My husband is quite genuinely surprised to see the results.. i dont think he expected any... and we are both thrilled to have finally discovered the problem that has been holding our little boy back for so long. thanks everyone... i really mean it... you guys are all so wonderful

a million hugs x x liz

wolfie Enthusiast
wolfie
Posted

We also saw results quickly....within the first week or 2, for both me & my son. DS had behavioral issues and he is just genuinely a nicer person all around off of gluten. His grades have improved, too!

Keep up the good work!!!! :)

Confused in Iowa Rookie
Confused in Iowa
Posted
Well technically its been two weeks but I dont think the first week can count as we made so many mistakes and unwittingly gave our son food with gluten - and I expect we will make lots more mistakes too... but since going gluten free (strictly) about five days ago, things have changed in our house and I dont know whether its a fluke or not! I really only started noticing the changes in his behaviour during the last two days more so... he's waking up happy... he's playing happily... everything isnt a problem... which is rare! He didnt have gastro issues but then he hasnt had dairy in his system for almost two years now and while he was having dairy, he had a lot of gastro issues. However, his mood swings have almost compleletly settled down! Is it possible to see results so quickly??? He tested negative for celiac and the doctor seemed pretty sure that meant he didnt have it.... but I am so sure that this is a positive and fast result... I know that if this is an indication of what life will be like in the future then I will be perfectly content to spend my days baking bread and rummaging through health food shops.. .and spending a goddamn fortune!!... I posted a few days ago about how I had spent hours crying recently... I had such a bout of the 'are we doing the right thing?' blues... and now I really believe that 'yes we are!!! I'll keep you all posted on his progress but if this is not a coincidence, then I am seriously impressed (and a lot more relaxed!)

Thanks for everything everyone... thanks for the advice...

Liz in Ireland.

x x

I agree with you - i saw differences in my son as quickly as you did. Not only with his personality, but his school work...last year struggled with a D average and this year in 6th grade he made the honor roll! I was so proud. So I'm like you. As much of a pain it is to figure this diet out, I'm with you that it is so worth it to have a happy son.......i always just blamed his personality on him getting it from his father, but it's so nice now to have him be so angry all the time.

My son never has had any stomach troubles, so when he was diagnosed, I was sooo in the denial thing, and thought the Dr. was just crazy and this was the health fad of the now type thing...but seeing the results that we've gotten so far, it is just amazing.

Now if they'd just find some miracle cure for it, this would be a beautiful thing!

Juliet Newbie
Juliet
Posted

My son (who was two years old and awake for only 3 hours total every day before going gluten free and looked like one of the starving kids with the distended bellies) got his energy back in 9 days - and we were making mistakes that whole time (Rice Krispies, O's cereal made from oat flour, other things w/ malt). He didn't nap at all (he still normally takes naps now, but he was so happy to have energy), and he was practically stumbling at the end of the day trying to still move, but his muscles were so atrophied he could barely do it! The next day he was sore from the exercise but still had energy! It's tough sometimes dealing with it, but to see your extremely sick child turn into a normal, happy kid makes it all worthwhile!

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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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    • 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
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      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.
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      High DGP-A with normal IGA

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      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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