anything to gluten-free diet?

[tfsmdfacs]

not yet diagonsed but have most symptoms of Hashimoto's
Is there any sound scientific evidence that gluten-free diet is of benefit?

[Applecore]

I thought that also but after my colonoscopy he said you don't have celiac.  I think I wasn't eating gluten when I took the blood test but I can't remember.  This is still confusing to me.  I am going to go back to a doctor that I went to before.  He is a holistic MD.  I will ask him.  It just takes me time as I am so busy and this doctor is 100 miles away.  How do you know that you don't have it but have the genes.  How did they test you?  I think some of my grandchildren may have gluten issues.  What kind of a doctor tested you ? I have copies of my blood tests from the doctor that said I had celiac.  I will check and see if I can post what it said.  Thanks for your information.  Linda

[kevieb]

applecore--maybe you already know this--but a colonoscopy won't tell you anything about celiac disease.  Celiac causes damage in the small intestine.

Stool tests are also questionable as far as diagnosing celiac, although they can tell you if you are not absorbing fat.  Do you know what kind of blood tests your holistic doctor did to test for celiac, and were you still eating gluten when you were tested?

Regardless of any tests, if gluten free makes you feel better, then that is great!  There a re people who do not have celiac that have a gluten intolerance---they feel crappy when eating gluten, they just don't get the damage in the small intestine.

You brought out an excellent point when you said that when you have someone in the family with celiac, usually others will, too.

Our ped GI told me that was how they found a lot of their celiac patients---they diagnosed a child, so then they tested the parents and discovered that  at least one of them had it also.

It can be tricky because the symptoms can vary so much from person to person.

I have one of the main genes, but I don't have celiac---I have considered going gluten free, though, because I have heard it can help with chronic pain---we already cook most of our food gluten free---I would just have to mostly change my snacks to be totally gluten free.

[Applecore]

I was going to a holistic doctor at the time and he did extension stools test and blood tests about 16 vials.  He told me according to his tests I had celiac disease.  I had been gluten free for a while ( I will have to check my records to see how long) when I had a colonoscopy.  The GI doctor said that I didn't have celiac.  I still do the gf diet as I feel better on it.  I am also doing Great Taste No Pain program Sherry Bresia.  That is helping me also.  I am still having pain and some gas.  The GI doctor said I had severe gastritis and to take a prilosec 2 times a day.  I don't do that.  I was until I started the GTNP program (it is a combination of foods).  I am still working on this.  My neice has celiac according to blood tests no biopsy.  She had extreme pain, diarrhea, couldn't gain weight, couldn't eat out as she would immediately throw up and have diarrhea.  She is gluten free and doing great.  When you have someone in the family usually others have it also.  I believe I am gluten intolerant.  I'm still working on this.   Linda

[courtney48]

Thank you very much for the detailed answer.  I am going to ask my GI about gluten sensitivity.  On a side note, I love that you have such a large family!  :)

[kevieb]

One of my twins got nauseated about the time a virus was going throught the house--so we didn't think anything at first, she was also having a lor of reflux issues at the time.  She was having the runs, too, but didn't tell me that.  The nausea went on for months and several tests were done--including a scope, which showed esophageal thrush.

Her twin sister had rashes, family doc diagnosed them as numular exema--and some of them were, but she also had rashes on her ankles and her knees.  I was looking up rashes on the net, and discovered the skin manifestation of celiac called dermatitis herpetiformiswhich can  be located anywhere, but is usually on the knees, elbows and behind.  I called to my daughter to show me her elbows, and she walked up to me and said it was worse on her behind.

We did allergy testing and I made sure I pointed out to the allergist where her rashes were located---he suggested we test for celiac---it came back positive, but a scope was ifffy.  

We had met our stop-loss for the year, so I had everyone tested with a blood test. All 3 girls came back with a positive test---and it was kind of a no-brainer---he told me to put them all gluten free.     My youngest daughter had no symptoms.

We have had genentic testing and know that my hubby and I and 8 of my 9 children all carry one of the main genes.

[courtney48]

Hi kevieb, can you share what your children's symptoms were that made you have testing?  Thank you in advance.
:)

[kevieb]

applecore--how long were you gluten free when they did your endoscopy?  What type of celiac test did they run that was positive?

I have 3 children with celiac disease, all 3 had different symptoms, one had nothing show up on a scope, her twin sister had only one spot that might suggest celiac,  We did blood tests on everyone and 3 daughters came back positive for celiac---the doc didn't even bother to scope the 3rd child.

I asked about the scopes showing no damage, and he said the scope can only get in about 6 ft and the small intestine is about 22 ft.  He said he was sure that they had damage.  Also, the damage can be patchy and if they don't catch it with a biopsy, the biosy will look negative.

In first couple of years, we had our girls blood tested every 6 months to see how well they were following the diet.  Their levels would drop when they stayed gluten free, and raise when they cheated on the diet.

[Applecore]

I have been totally gf for over a year and I find that I do feel much better.  My mind is clearer and general overall feeling is better.  I don't miss the gluten at all.  There are as many products and great bread(Rudi or Udi) that I don't even miss them  You can buy wonderful donuts whatever sweets you want to eat.  I was tested for celiac and was positive at first and that is why I originally went g/f.  I went back on the gluten after they told me after an endoscopy that I didn't have celiac.  It is not a great noticeable difference for me but I just know that a lot of pain stopped in my stomach and my head clearer and general overall better feeling.  It is a healthy way to eat.  As goolarra said above it doesn't do anything for the hashi that I know of.  Linda

[goolarra]

As far as I can tell, no.  If there is, the proponents of a g/f diet have certainly kept the hard science a secret.  

Many people feel better g/f.  If it makes you feel better, then it's definitely worth doing.  However, if you're doing it in hopes of "curing" Hashi's, I suspect you might be very disappointed.  

Many of us have not changed our diets at all.  I went g/f for almost a year a few years ago (for reasons other than my Hashi's)...didn't change my antibodies, but was a bit disasterous in other ways.