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Recent Diagnosis/suspicion

patylu

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patylu Rookie
patylu
Posted

I recently have been told to try a gluten free diet. My labs (blood and samples from a scope) are both within the normal ranges (but on the high end) for Celiac but my doctor says that I present as someone with Celiac. I've been eating gluten free since Thursday (5 days). I feel a little better most of the time but sometimes after I eat I still feel a little nauseous. Is this normal? Do I just need to give my body more time to work this all out? My doctor told me to try gluten-free for a month with the hopes that because I'm borderline for Celiac that eating gluten-free will help my stomach issues. So far I'm not so sure it's helping that much.

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Marlie Apprentice
Marlie
Posted

There is the possibility you could be getting Gluten, as it is difficult to get everything 100% gluten free to begin. Five days is a short time. It takes much longer than that for your intestines to heal if you do have Celiac.

Lisa Mentor
Lisa
Posted

Yup, it does take a while to feel better for some. Some a few days, some a few years. :o .

I would also include dairy in your elimination diet. After a few weeks many people can re-introduce dairy without issue.

And I want to add that the gluten free learning curve is pretty steep. Depend on this site to guide you through these next few weeks. That's why we're here.

And welcome! :D

patylu Rookie
patylu
Posted
  • Author

Thanks for the advice. I figured I just needed to give it more time. Eating gluten free has a big learning curve for sure. I'm hoping to be a quick study! :) I've already replaced plastic containers and cooking utensils. I'm getting ready to order some stuff in bulk online to stock up. I'm just tired of feeling so bad all the time and would like to see some improvement, you know?

cassP Contributor
cassP
Posted

Thanks for the advice. I figured I just needed to give it more time. Eating gluten free has a big learning curve for sure. I'm hoping to be a quick study! :) I've already replaced plastic containers and cooking utensils. I'm getting ready to order some stuff in bulk online to stock up. I'm just tired of feeling so bad all the time and would like to see some improvement, you know?

it really takes a good 3 to 4 weeks to feel significantly better.... i mean- in that first month- you really cant trust your reactions to anything- you could almost react to ANYTHING..

also, try to eat a really healthy gluten free diet- at least for a few months- try to avoid dairy, and gluten free breads, cereals, and cookies & treats... and even grains/complex carbs... these all can be too much for a sick digestive system to handle

patylu Rookie
patylu
Posted
  • Author

I know everyone is saying to avoid dairy but what about yogurt? It has probiotics which are also good for digestion. Can I eat that? There really aren't many breakfast foods I like and yogurt happens to be one of them.

cassP Contributor
cassP
Posted

I know everyone is saying to avoid dairy but what about yogurt? It has probiotics which are also good for digestion. Can I eat that? There really aren't many breakfast foods I like and yogurt happens to be one of them.

it just depends on your body- if you have lactose issues &/or casein issues. for ME, personally- i only eat yogurt maybe 2x a week- and i eat a Goat Milk Yogurt- it doesnt seem to bother me at all. now, if i indulge in a mocha, or anything that contains milk- i may have a little "D" the next morning... or maybe even crampy issues soon after i consume it. and cheese gives me negative effects as well.

so, idk... maybe you could try some Goat Milk Yogurt ( i get mine at whole foods).

and also, u say you get nauseaus later after eating- maybe you have some gall bladder issues??? it's common with gluten intolerance. i did maybe 5 liver flushes over the last 6 years... they're a real pain, and i only had 1 real productive one... about 400 stones came out.. or actually like 200 stones- that looked like they had all been cut in 1/2.

liver flushes are a real process tho, dont feel like going in to all the directions. but i would suggest a great tincture for the gall bladder- i get it at

www.sensiblehealth.com

it's called: Gold Coin Grass... it goes into the gall bladder and softens & dissolves any gall stones or stagnant bile... it's great really, and helps with digestion/also works like a "digestive bitter". you take 1 tbsp. 30 min before bfast. only 3 weeks on, then break, and you dont take it during a period, or if on The Pill.

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patylu Rookie
patylu
Posted
  • Author

Thanks for all the advice everyone! This might be a little too much information but it also seems like my body is going through some sort of "flush" since I've started this diet. Well, really it's not still just the first few days. I was in the bathroom A LOT on Saturday but now it's back to normal. Anyone else had similar experiences?

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      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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