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

14 Weeks gluten-free And No Significant Change Yet...Is This Normal?

jennifert

Recommended Posts

jennifert Newbie
jennifert
Posted

I have done this diet strickt for 14 weeks now and notice little if any change. I am wondering if anyone else has had similar experiences. Most people I have heard of have some change in a couple of weeks, even if minor...

My biopsies for the last 5 years or so have always been negative for celiac but my GI wanted me to try Gluten Free becuase of my symtpoms and because the anti-gliadin test was positve many years ago. However, the TTG test was recently negative, as well as biopsy- and i hadn't yet started the diet. I want to give this up, but I wanted to see others experinces first and I wanted to give it a long enough trial.

Just for back ground- I had lost 17 pds in last year, developed neurological symptoms, skin rashes, joint issues, etc...after 14 weeks, still have all those things, and only gained 1 pound and I think its becuase I am eating so much meat now! :)

Any feedback would be appreciated.

jennifer

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

There is a huge difference between "no significant change" and "no change at all".

Two questions:

1. Are you certain you are completely gluten free with no contamination? New wood cooking things (cutting boards, spoons, etc.), new colander, no shared scratched non-stick pans, no shared condiments, no hidden gluten in food items (soy sauce, etc.) or other items (hand lotion), no oats, and no eating out?

2. Are you noticing ANY changes? Not just in symptoms you started with, but in any other area?

iamgf Newbie
iamgf
Posted

You are absolutely right to stay on the diet. I am sure your GI has told you, but you can have blood tests and biopsy's come back negative for Celiac, and still have Celiac.

If Celiac is the issue, 1st) your body must heal 2nd) your body can then utilize the nutrients you feed it and 3rd) only then can your WHOLE body begin to experience relief. It is slow and gradual healing, with slow and gradual relief. Give you body at least 14-months for this process.

Have you had your thyroid checked?

jennifert Newbie
jennifert
Posted
  • Author

Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...

jennifert Newbie
jennifert
Posted
  • Author

Iamgf: I have had my thyroid checked a million times, and they did a spinal tap to check for MS- they put me through the ringer! My GI told me he did not think I needed to continue because I had not gained any weight but I still kept on a little longer cause I wanted to give it a good trial. My rheumatologist said it can often take longer- but when he did the colonoscopy and endoscopy he said the villi were intact and no damage... so I feel so torn about what to do.

tarnalberry Community Regular
tarnalberry
Posted

Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...

That's fair - 3 months on a strict gluten-free diet generally ought to show *some* change (though not necessarily complete relief, of course).

I'm not a huge fan of genetic testing. It gives you a clue, but it's like a riddle - the clue is hard to gauge for its real value.

If you've got the patience for it - and it sounds like you do - I would go with something like an elimination diet to see if something else is bothering you. There are LOTS of ways to do an elimination diet, and you don't have to go hard-core right away if you don't want to. In your shoes (and I'm not saying this is the right answer, just what I would do), I would keep gluten out of my diet, and eliminate the next major allergen you suspect. I'd probably go with dairy, myself, but it'd depend on what you generally eat. Leave that out (completely) for a month, see if there are any changes. If none, move to the next (I'd probably go to soy) for another month. And so on.

Yes, it's an experiment, but it's under your control and you can take it any direction you want.

jennifert Newbie
jennifert
Posted
  • Author

thanks for your feedback Tiffany- Are genetic tests not accuate? I just figured if both of the genetic tests for it came out negative it would at least exclude it more... maybe I'm wrong...

As far as elimination diets, I don't use soy..I guess the only thing would be dairy, but I dont' think that would cause the symptoms I am having such as the weight loss, stomache spasms and neurological isues. Maybe I am wrong...but I don't have diarreah- more on the constipated side, after some dairy. I could see if it was the opposite, since that would lead to weight loss. I am going to the doctor today to hopefully get a little more direction.

thanks again for your help...

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.

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 Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.