Newbie

[Dandysam]

Hi all, 

firstly apologies for long post. 

for awhile I suspected hubby having a gluten allergy. And finally after some serious nagging to the gp he had a test on Monday. Now for last say 10 years he’s had stomach issues. Gone from 18 stone to 26 stone, suffered with anaemia, fatigue , he’s post stage 2 diabetic and now suffers with lymphodema. One leg serious as I call it elephant leg and other started. Condition seem to get worse after being rushed into hospital 5 years ago with septis and cellutis.   He’s had colonoscopy to remove growths which we though was his stomach issue . Eased a bit but still chronic pain  that can stop him in his tracks. It’s always right side above groin area. And he says feels like a hot knife slicing inside of him.  but nobody suggested a test . From Monday I have changed our diet to almost gluten free. ( still learning. ) He’s not suffering pain like he was . So not taking buscopan several times a day. He’s not feeling so much fatigue and that’s just in 3 days. We are awaiting the results so it’s not confirmed yet. But has anyone else had symptoms like this . For years he’s been made that his weight is making his health suffer but we have a balanced diet and for his size he doesn’t eat the amount to make his weight balloon . With his legs like they are he’s limited to exercise and although he’s never been exercise mad he was a fairly active guy helping his dad with sheep rearing. Now he’s lucky if he can walk to the car and back. 
many advice will be gratefully received . 

[trents]

Welcome to the forum, Dandysam.

First, you use the term "gluten allergy." People can have an allergy to gluten but I suspect you are referring to celiac disease which is not an allergy but an autoimmune disorder. Your hubby's stomach pain, anemia and fatigue can be indicators of celiac disease. Celiac Disease ("celiac disease") cannot be diagnosed with a colonoscopy as a colonoscopy is examines the lower bowel, aka, the large intestine. Celiac disease causes damage to the upper or small bowel. He would need an endoscopy and a biopsy to detect the damage caused by celiac disease.

However, there are certain blood tests that can detect antibodies produced by celiac disease. I would ask your physician to run a full celiac disease antibody panel. That's the first step in diagnosing celiac disease and if it is strongly positive there may be no need for an endoscopy. celiac disease has long fingers that can result in a host of other medical issues as the damage to the small bowel mucosa it causes prevents adequate absorption of nutrients such as vitamins and minerals.

How much of hubby's weight gain is caused by the lymphedema? 

[Dandysam]

He’s been under lymphodema clinic for two years. All they have suggested is medical socks which he has worn religiously. Having several new measurements. I would say that  one leg would have over a stone if not more in weight. In two years he’s gone from a size 11 shoe to 13 . The other leg isn’t as bad but since corvid they have cancelled 3 appointments. But then suggested that his bmi was contributing to the problem. He knows that his weight is a issue. But for over a year I have been extremely cautious with correct food. And he doesn’t eat anything near his recommended allowance. Now the width of his foot from the swelling is affecting his job as a bus driving. Thank you for the advice and will suggest that his doctor gets him those test. He has been diagnosed with divticulitus ( excuse the spelling ) but was never given up follow up support. And basically he’s got in with it. That was 10 years ago. And was told probably gall stones but he needs to lose the weight to be considered for operation. But nothing was ever mentioned again. 
his gp has never referred him to a dietician . Until he got diabetes and he became post diabetic within 6 months through diet. Just cutting out sugar in his diet . Which he did unconditionally. But nothing was said about his weight even thou he’s asked for help. 

yes when he had the colonoscopy. The specialist stated that it was healthy apart from the growths that grew double in 6 wks of doing first colonoscopy  to second. But there isn’t any follow up appointments as all the growths were  clear . And he’s been discharged from that specialist . 
it was only when I put in a list of symptoms in a search engine and it came up with gluten intolerance  that I told him to ask for a gluten test . But will research this further . 

 

[trents]

Let me reinforce something I stated in my earlier post. There are several gluten-related medical disorders. There can be an allergy to gluten. There can be a sensitivity to gluten. There can be an intolerance to gluten which causes diarrhea such as you see when people have lactose intolerance to milk sugar. These are all distinct medical conditions but none of them is the same as celiac disease. Celiac disease is an autoimmune disorder which causes damaging inflammation to the lining of the small bowel when gluten is ingested. The gluten found in wheat, barely and rye and, for about 10% of celiacs, also in oats. The only known antidote for celiac disease is total elimination of gluten from the diet.

[Dandysam]

Thank you for advice. Going to do more research and await for blood test to come back to move forward. And see what happens. Currently reading about diets . Again thank you for the advice. 

[Awol cast iron stomach]

Inflammation can cause swelling that to the outside world appears to be weight gain. The triggered innate immune system can really ramp up and throw a lot of mediators at damaged tissues, organs etc.

I am glad to read he is finding some relief with diet. If he is motivated he can certainly try more.

I use a variety of things beyond a gluten-free diet to manage my hairpin trigger innate immune system. On the forums I am one of the alternative type people. 

I am gluten-free, corn free, (corn starch is evil says my immune system) and milk free. I use nut milks.

I don't eat out and eat whole foods avoiding processed.

I find accupuncture helpful. I utilize epsom salt baths, infared sauna. Quercetin is more helpful to me than antihistamines.

I hope he in time with your support discovers some strategies to get some relief and manage his inflammation.

Good luck

[Dandysam]

We are awaiting the results from the test but blood test that have returned have pointers towards celiac. We have cut out major risks of gluten but it’s a learning process of what is hidden. We have also found peppers and black pepper results in pain later. So where some products I thought was safe isn’t. We have had this week just fresh veg fruit and meat no processed food. Looking for alternatives to enhance his diet. Making our own treats. It’s hard currently as it’s a learning process but certainly a massive learning curve. With the current situation in the uk. We are limited to resources like dietician and what to do next . But at least hubby is feeling better just within a week. Doing loads of reading on research and recipe building . Which has been a godsend having a lot of gluten-free recipes to follow. So fingers crossed not only will hubby benefit but so will I . As we as a family will do it together . 

[GFinDC]

Hi Dandysam,

It sounds like you are on the right track.  If he is feeling better gluten-free then there is some kind of problem with gluten in his body.  You should think about what you want to do as far as future testing.  The usual next step after a positive antibody tests is an endoscopy to take biopsy samples of the small intestine lining.  They check those biopsies under a microscope for celiac type damage.  The thing to know is the endoscopy has to be done on a gluten diet.  So if he wants the endoscopy or any celiac testing later, he will need to do a gluten challenge.  IE, eating a small amount of gluten daily for a specified period of time before the testing.  If a formal diagnosis is not important to him, then there is no need for further celiac disease testing.

Eating whole foods and avoiding processed foods is a good way to start the gluten-free diet.  Also avoiding oats and dairy are helpful.  it can take 6 months or more to get the hang of the gluten-free diet and also for digestion to settle down.  It can help to avoid sugar (as he does) but also rice and white potatoes.  Those starchy foods can cause bloating etc.