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Gluten sensitivity


Mermaidzen

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Mermaidzen Newbie

Hi I hope you can help. My daughter has had chronic constipation for the last 7 yrs. she was tested for celiac a few years ago and it came back clear. I have at last got her seen by a paediatrician after years of trying. She has said to come of gluten for 4-6 weeks. She started it with doing faecal impaction regimen so had a good clear out. 

I am wondering how long it will take till we know if gluten is the cause. 

As to clearing out. She has her own spreads and have checked everything in the kitchen and make sure that everything is well washed before she uses it to make sure no gluten contamination 


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cyclinglady Grand Master
1 hour ago, Mermaidzen said:

Hi I hope you can help. My daughter has had chronic constipation for the last 7 yrs. she was tested for celiac a few years ago and it came back clear. I have at last got her seen by a paediatrician after years of trying. She has said to come of gluten for 4-6 weeks. She started it with doing faecal impaction regimen so had a good clear out. 

I am wondering how long it will take till we know if gluten is the cause. 

As to clearing out. She has her own spreads and have checked everything in the kitchen and make sure that everything is well washed before she uses it to make sure no gluten contamination 

I am sorry your daughter is ill.  

Be sure to read the Newbie 101 thread under the “Coping” section.  Things like a dedicated colander and toaster are in order.  

Just because she tested negative a few years ago, does not mean she does not have celiac disease. It can develop at any time.  You might want to check to see if a complete panel was run.  Not all celiacs test positive on the standard screening TTG test (like me).  Some celiacs are seronegative.  In that case, they might go directly to an endoscopy. 

But it sounds like your doctor wants you to try the gluten free diet.  Six weeks might not be long enough to recover or tell if the diet is working.  Why?  We all heal differently, we often have different intolerances/systemic issues beyond the gut and that take time to identify, and the diet has a steep learning curve.  You may have to give it more time.  

In the meantime, read.  The more you know, the better you are able to work with your doctor to improve your daughter’s health.  They can not keep up on everything!  

 

Ennis-TX Grand Master

As mentioned above check out the newbie thread, also a few simple and easy ways to prevent CC issues, get new microwave cookware like the nordic ware omlette maker, steamer, grilling plate (with cover) rice cooker etc. Cheap easy and disposable if you mess up with that price. Crock pot liners will make preventing CC and doing stews in a crock pot easy with whole foods. Butcher/Freezer paper makes a nice clean prep surface and eating mat for kids that you can just toss when done. Might use food service gloves if your handling gluten, gluten is a protein smaller then a germ, anti bacterial and bleach do not destroy it. 500F in a oven self clean will if you want to decon cast iron and some high temp metal cooking dishes. Think of it as blood that a CSI team is looking for, are you sure you removed it and they will not find it?

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Mermaidzen Newbie

Thanks for the advice will definitely look into it more 

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    • Richardo
      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.
    • trents
      Your chest pain could be related to the Sarcoidosis. "When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur." https://en.wikipedia.org/wiki/Sarcoidosis   The bowel incontinence could be caused by surgical damage (or scar tissue) to the cauda equina nerve bundle in the lumbar area of the spine. Or, it could be related to unintentional gluten exposure.
    • trents
      Diabetes type 1 or type 2? Type 2 diabetes has a statistical correlation with celiac disease.  The B vitamins work in synergy with one another so I still would recommend a B-complex. This may also help your anemia which is evident from your low ferritin, hematocrit and hemoglobin.  Your "chest pain arm pain and burning with increased weakness in my legs" would seem to correspond to the areas of your spine where you have had surgeries. My observation is that spinal surgeries seldom prove to be successful in the long term as they don't address underlying degenerative problems.  I will attach embed an article which may be helpful to you in eliminating gluten from your life. There is usually a real learning curve involved in achieving gluten free eating habits on a consistent basis as gluten is hidden in so many food products where you would never expect to find it and can be masked by terminology such "food starch". Eating out is the number one way to sabotage your efforts to eat gluten free as even when you order things that are naturally gluten free they often become cross contaminated with wheat back in the kitchen by being prepared and handled along with wheat containing foods. Another factoid that you need to be aware of is that for mature adults, it typically takes 2-3 years after achieving a consistently gluten free diet for the mucosa of the small bowel to experience complete healing. However, considerable improvement in symptoms usually occurs in a matter or weeks or months.  
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