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New Here - Dealing With Possibility Of Late Dx

Dewey56

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Dewey56 Newbie
Dewey56
Posted

Hello to all,

My dh has been ill for several months. He had a bad virus. This also let to depression, anxiety, and we even found out a low testosterone level. He also suffered a great weight loss.

He took a very natural approach to getting better. I believe that some dietary changes, which included cutting out wheat, improved his stomach problems greatly. Our daughter is gluten-free/cf so we are pretty well versed in this area, but I am having trouble fully convincing dh that he should keep away from wheat products.

Tomorrow I go food shopping and will pick up some more ready made gluten-free products. I have been trying to convince him to keep a food diary so that he can chart how well he feels and what he ate.

I think he has a late onset of this, but I don't see much info on that.

I need to know if Spelt flour is ok. I don't give it to my daughter, but he liked some muffins I got and he needs a good substitute and especiallly to put back the weight.

I'll post again at another time with more questions, but thanks for reading this for now.

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celiac3270 Collaborator
celiac3270
Posted

Spelt is not good.....one of the bad grains...very similar to wheat, or as one site puts it:

What is Spelt? Spelt (triticum spelta), an ancestor of wheat, is the most ancient and pure form ... Of all grains spelt is best suited for the human digestive system ...

LOL......best suited for digestive system........haha.....anyway, it's no good....there's a list of good and bad ingredients on this site (celiac.com)...go to site index on the toolbar on the left, go to safe and forbidden ingredients list, and you can find it......

Alexolua Explorer
Alexolua
Posted
I think he has a late onset of this, but I don't see much info on that.

It can appear later on in life (least the symptons). Happened to me, and pretty sure with a lot of others who post here. =)

tarnalberry Community Regular
tarnalberry
Posted

Yep, I'm almost completely positive that mine was late onset as well. The only symptom I might have had as a kid was getting sick often, but I was also under a lot of stress and had undertreated asthma, so I don't think that's it. :-) (Yes, I know they can be related, but really, no symptoms that correlated that I can remember.)

debmidge Rising Star
debmidge
Posted

Late onset for my husband (he was 27). I have a co worker who was about 65 when he came down with celiac disease.

Don't agonize over weight loss so much as to get him going on getting tested to confirm celiac, etc. The sooner he gets diagnosed the better - this way you know for sure. Other health conditions could make you lose weight and you want to be certain you're on the right course.

We do most of our shopping at a natural food store that has groceries, celiac.com and other websites.

lovegrov Collaborator
lovegrov
Posted

He needs to be tested. ALL first degree relatives of somebody with celiac disease should be tested and it sounds like he definitely has the symptoms. Plus he improved when he cut wheat. Late onset is not at all unusual. I was 46. My father was 70. I urge you to get him tested but he must continue eating wheat beforehand.

Spelt is definitely not OK.

richard

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

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    • catnapt
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    • trents
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      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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