Help could this be CD?
Posted , 5 users are following.
I'm typing this for the husband in hope for some answers. My husband is 40 and has been feeling ill for over a year an a half. Yet every lab, test, procedures that are done come back as normal. He hasn't worked since March because he has so much pain and extreme tiredness. It's been rough seeing him go through this. his symptoms are extreme fatigue/muscle weakness with tingling and numbness, every part of the body hurts. he says he feels as if his arms and legs are on fire. bloating, tounge sores, dizziness/body imbalance , brain fog, ears ringing w/ pressure, diarrea and I'm sure there's more. It's been hard to see him go from being a super active dad to not being able to get up from the couch at times. He gets tired from just walking from one room to the next in our apartment 
He has always had a sweet tooth especially for sweet bread and now that I've read about CD, it seems as if he is probably killing himself w/ out knowing it. I'm tired of all the doctors just telling us it's all in his head and that he is depressed. Hell No I will not take that as an answer, I'm his biggest advocate and have to stand up for him and keep on telling the drs we need answers. I won't accept CFS (chronic fatigue syndrome) as an answer. I'm begging and pleading with doctors for answers. I'm so scared to never have the man I once had, I just want to see him happy again. My 3 kids need him healthy and happy which seems impossible. Tomorrow he has a drs appt with a new primary in hopes to start from scratch and start more tests.
Could this be CD anyone else feel like this? Please Help
1 like, 5 replies
deb50 EliKat
Posted
im sure the new doctor will do a full range of bloods to try and find the problem so ask for the extra one for coeliac disease.
When you have an illness if untreated your signs and symptoms become worse your energy levels drop and depression can set in.......that would be understandable.
I hope you get some answers and your husband gets the help he needs
Id like to know how you get on
Debs
lynda01728 EliKat
Posted
Hi,
Quite simply....YES....this could be Coeliac and tests are not always accurate. Mine were negative and I had all the symptoms you mention plus more. I was put on anti depressants and got sicker and sicker. Eventually a Gastroenterologist did genetic testing and diagnosed me as 'a text book case of Coeliac'. This is apparently an expensive test which is not offered everywhere but it saved me.
It's over 2 years now since I stopped eating gluten and and I am at last feeling more like my old self. I also follow a FODMAP diet as my stomach will not tolerate many foods but this is a legacy of being left with a disease and slowly poisoning myself.
My advice would be to forget GPs as they generally know nothing about Coeliac and just want you out of their surgeries as soon as possible to get the next one in. They also get a lot of incentives to prescribe the drugs they dish out so freely.
Ask to be referred to a Gastroenterologist. You may need to be the proactive one as your poor husband may not be strong enough to battle our failing health system. It will be a battle but ones health is invaluable.
Best wishes and good luck
Lyn
aveline EliKat
Posted
Chiming in to agree with others that this could be CD. He should continue eating plenty of gluten while new tests are performed, no cutting back now! I'd go so far as to suspect that he has some deficiencies possibly as a result of malabsorption (B12, iron, Vit D?). I'm in no way a medical professional, but I'm the mum of a Coeliac who happens to have low B12 herself...I'm familiar with too many of his symptoms.
HUGS to you both! I wish him speedy results AND recovery! Please do keep us posted.
EliKat
Posted
Thank You All for your reply, yes it's been so hard to see this strong, active dad that I love go through this. As for his visit w/ the GP today was a waste of time 😔 I wasn't able to go w/ him so I printed a sheet w/ all his symptoms and a few things he should suggest to the dr. Well she simply heard him and said sorry I don't want to waste your time but I don't think I can help you. the previous GP has already ran all the tests I would ask for. She did suggest he go to a Scott and White center. My poor husband was literally in tears saying this was the end for him. I went and visited him during my lunch and said No its not we will keep looking. Lets call your old GP and get the referral. Whatever it takes we will do, if we have to travel far we will. In the inside I'm extremely sad because we were so hopeful. This has been a never ending nightmare. One thinks things like this won't ever happen to them and then it does. It's heartbreaking
Thank You all for the kind words and suggestions. We have started calling the gastroinalgist
irene68104 EliKat
Posted
Unfortunately he'lll still have to eat gluten until he gets an answer. All my tests came back negative too, but I was evenually diagnosed with the skin form of coeliac disease. The damage can be further down in his gut which is not reached by the endoscopy exam.. you said he likes sweet bread, genius do a GF fruit loaf which is very nice, but of course he cannot have that until he has all his GF tests redone. Is it possible to go private to get the result he so desperately needs. If it all comes back negative again he could have a gluten intollerance which is treated by the same method ie. cutting out all gluten from the diet., when he does go GF watch out for sneaky gluten in things like sweets, sauces things like bisto,brown sauce,whisky beer, you get very adept at reading labels.....when in doubt don't eat it. good luck with a diagnosis.