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Still Ill After 3 Years Gluten Free

liz1267

By liz1267
in Coping with Celiac Disease

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liz1267 Newbie
liz1267
Posted

I am the mother of a son, age 29, who has had Celiac Disease for over 3 years. He has been sick ever since he came down with gastroenteritis after eating out at a restaurant. It took about 7 months before he was diagnosed through blood test (extremely high) and biopsy (scalloping). He immediately went on a gluten free diet, though in the beginning he tried to eat some of the gluten free foods that are marketed to Celiacs. He has seen experts in the field, going through some severe symptoms. They could really do nothing for him. Therapy was suggested and he did see a therapist for a while, but it became clear that on the days he was feeling better he was not depressed. He spent a lot of time and money trying to see if he had another autoimmune disease but every test came back negative.

Last winter he had genetic testing done and he has both Celiac genes, Dq2 and Dq8. The diarrhea is now under control but he still has peripheral neuropathy- severe according to a nerve test, ataxia, and esophageal spasms and reflux. These symptoms come and go but do not disappear. He eats only a few foods and cooks everything himself. Right now he's eating plantains, rice, bok choy, celery, chicken, shrimp, and some frozen mixed peas, carrots, and corn. He drinks Pedialyte mixed with water that seems to help control the reflux. He does use the fodmap diet which has helped. He is working part time but needs the salary of a full time job, though he is not sure he can do it.

My question is this: What is being done for those Celiacs ( some estimate this is as high as 30%) who do not appreciably improve on the gluten free diet? Is anyone doing any research to help these people? My son is not getting any accidental gluten; he is fastidious about what he eats, as I'm sure many other people in this situation would be. He has accepted the life style changes he had to make but the ongoing symptoms, especially the neurological ones, are deeply disturbing to him. He feels, quite understandingly, that his life is on hold, and he has no idea when he will get better.

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

Some celiacs are very slow to heal and some have damaged parts that will never go back to the way it was... Most doctors don't mention it but it happens to some.  The majority of us will improve a fair bit in the first few years gluten-free, but recovery can take years which is super frustrating when it is implied that if we just stop eating gluten we will feel better. :(

 

I still do not feel as well as I had hoped to be after being gluten-free for over two years. I'm hopeful that I will improve some more but I think it is likely that the problems I have are here to stay due to un-repairable damage (nerve issues sometimes don't come back 100%) or from other health issues that my celiac disease may have kicked off.  

 

If you son has been gluten-free for a couple of years, there is a chance that he is sick from something other than celiac disease or he may need more time.  

 

Best wishes.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. When the brain and nervous system are impacted improvement can be slow. I know that all too well as I was still improving neuro wise for up to 5 years after being gluten free. A couple of things that I feel helped me a great deal were sublingual B12 and the help of a physical therapist. A PT may be able to help him with the ataxia issue so if your doctor can give him a script for one that may be helpful. Do make sure any meds, script or OTC are gluten free and also be careful to check supplements for gluten ingredients. Some supplements may say gluten free but contain wheat or barley grass and he doesn't want to take those. 

Do be sure to read the newbie thread at the top of the page and if he can read it also that will be helpful for him. 

mbr22m Rookie
mbr22m
Posted

I take methalated sublingual b12 too and that helped with my nerve problems. I had bad neuropathy. I also got gastroenteritis from eating out, and only started feeling better after a combination of antibiotics and supplements that my naturopath put me on (igG, DGL, glutamine, aloe, probiotics). I don't think most primary care physicians know enough about celiac to be helpful, At least in my experience, which is why I wound up seeking alternative medicine

kareng Grand Master
kareng
Posted

Are his blood tests coming back still high?  Has he had a repeat endoscopy to check if the damage has healed?  If all those are negative - it is possible it could be something besides Celiac.

SuzLin Newbie
SuzLin
Posted

He could have had a lot of damage? I've knocked out reflux (had it several times per day) with organic ginger root tea w/honey, daily apple cider vinegar tablet, low acid coffee, low FODMAPS, and chewing gum. However, reflux indicates inflammation so there could be another source or food? His diet sounds plain...He could have an upset of gut bacteria...yeast infections start in the gut! He could try diflucan (from a doc) to see if it helps. Have him try ginger root tea and apple cider vinegar tablets. Worked wonders for me!

lapetiteassiette Newbie
lapetiteassiette
Posted

As someone who suffers from food issues other than celiac I would recommend your son try to avoid chicken, shrimp, plantains. Chicken even the organic free range are fed mainly grains heavy on the corn and wheat. There is some discussion as to whether or not what the animal eats is detectable in the meat. All I know is I feel better & get sick less often avoiding anything chicken. Shrimp unless you know it is fresh wild caught is farmed in Se Asia. Like any other farmed fish they use anti biotics and other questionable practices to increase yield. Any fruit like bananas & plantains, even organic, are sprayed with pesticides.

He could be reacting to any number of things simply because his immune system is compromised. With patience and care hopefully he wil start to have more good days than bad soon.

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liz1267 Newbie
liz1267
Posted
  • Author

Thank you for all your responses. His blood tests show no gluten. He had a follow up endoscopy that showed some healing. He has regular blood tests for vitamin and mineral levels, and they usually seem to be ok, except sometimes potassium is a little low. I will tell him about the sublingual B12, can't remember if he has tried it. He is convinced he has continuing inflammation. Is it from a food he eats or something else? Who knows. I think the idea that his brain is being affected is incredibly scary to him.

mbr22m Rookie
mbr22m
Posted

Have they tested him for LOW stomach acid? The reason I ask is that the symptoms for high and low stomach acid are the same. GI was giving me prilosec, but then when I had saliva stool test, turned out I had low stomach acid and digestive enzymes, which was what was causing my reflux and the prilosec was making it worse

irwinjo75 Newbie
irwinjo75
Posted

Thank you for all your responses. His blood tests show no gluten. He had a follow up endoscopy that showed some healing. He has regular blood tests for vitamin and mineral levels, and they usually seem to be ok, except sometimes potassium is a little low. I will tell him about the sublingual B12, can't remember if he has tried it. He is convinced he has continuing inflammation. Is it from a food he eats or something else? Who knows. I think the idea that his brain is being affected is incredibly scary to him.

Just wanted to add that I found I could not eat the same foods all the time without developing a problem with them. I also cannot eat corn or eggs. My gut just won't take them. Oats are a no no for me, as well. It took me over 5 years to heal. It also took me a long time to realize that what we might think is gluten free actually contains gluten. Chicken, sometimes, can contain gluten. I found that unless I took some very good probiotics, along with digestive enzymes, I still have gut issues. And my Celiac tests are all negative. And ... when I was diagnosed, my brain was so affected that I could not add or subtract, remember my address or my phone number. I couldn't go anywhere alone because I would get lost. It got better. I have been gluten free for 14 years now, and I am still learning about how we can get "glutened" by foods that shouldn't have gluten in them. Corn being one of the biggest for being cross contaminated. He should be checked for vitamin D3 status, as well as B12. Many are very deficient in those.

beth01 Enthusiast
beth01
Posted

Chicken that is marinated can contain gluten, plain ole cut up chicken at the market does not. Please be specific when making blanket statements like " Chicken, can sometimes contain gluten". You give people the impression that they can't buy a cut up chicken at the store, you'll make them paranoid.

Plenty of celiacs eat corn with no issues what so ever and some have a problem. I don't believe it is from cross contamination though, more a digestive issue that some people just can't tolerate it.

CanadianK Apprentice
CanadianK
Posted

I've been on the Specific Carbohydrate Diet for a few weeks now and I'm seeing great progress. Perhaps he has other deficiencies or adrenal fatigue… 

 

I've been enjoying reading and learning from this site lately

 

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