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Finally I Have The Answer

Guest chickadee

By Guest chickadee
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest chickadee
Guest chickadee
Posted

:rolleyes: Hi, my name is Brenda, My 10 year old son and I have been diagnosed for 2 years :D

It was a long long road. I had all the misdiagnosis, IBS, uterus removed because of low iron, water retention pills because of swelling in the feet and hands, put on paxil for depression, Glucose intollerant, sugars would fluctuate 4-13 but always down to 7.2 before the 2 hours. I was extremely fatiqued all the time. I could get up in the morning and then after several hours of normal daily activities I would need to go to sleep. I was not able to do a 6 hour day at all. Working was out of the question. I started to have problems with irregular heart beats, burning in my chest, pressure in my chest and after 3 outpatient visits with them telling me that it was not my heart I decided that I needed te go beyond my family doctor and demand!!!! :angry: to see a specialist concerning my bowel issue. He finally said yes after much pestering. The specialist listened to me for 1 hour go on and on and on with every symptom I ever had up to that day and then she finally said you have CELIAC and I said What Is That ? :huh: When she was done with me I knew also that she was right. I told her that I had eliminated any products that had whole wheat listed on the lable because of my own discomfort when I ate these foods At this point I had been doing this for 4 years.She said that would interfere with my biopsy results concerning a celiac disease diagnosis and wanted me to go back to eating everything on the list she gave to me. I tried for three months to eat all the things on the list but I know that I never ate them enough bcause it was just to uncomfortable and painful when I did. The blood work was negative and when she did the biopsy it to came back negative but she saw so much damage to my villi that she did the biopsy again. It was negative as well. After this she said that she was convinced that I had celiac because of the damage to my villi and my own testimony, and that if going gluten free eliminated my symptoms then Celiac Disease would be the diagnosis Then I tlod her about my son having three or more boughts with diarrhea a day and his complaints of stomach, abdomen, leg and back pain. She said that he would need to go the the sick kids hospital for confirmation of diagnosis.

my son and I went on the gluten free diet and within weeks I knew for sure that she was right. There were times in the first year that I tried to eat gluten products but the gas, bloating, diarrhea, fatique etc..:rolleyes: from those experiments were so severe that I have been convinced beyond any doubt that I am a celiac and that even if I did want to eat anything I like, it would never be possible. You could never pay my son enogh money to deliberatly eat any of the forbidden foods because like me he has immediate results.

I hope this helps others who, like me, have no positive biopsy but have all the symptoms. I am a new person since going gluten free. I am symptom free (except when I accidently ;)^_^ contaminate myself, I look like I'm 9 months pregnant)

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plantime Contributor
plantime
Posted

I'm glad you have an answer! Welcome to the board, post often!

Guest Viola
Guest Viola
Posted

Welcome Brenda, many of your symtoms are familiar to a lot of us. I too had a total hysterectomy because of bleeding 3 weeks out of every month :o It would not have happened if I had of been diagnosed earlier. Of course one needs vitamin K for the blood to clot and I wasn't getting any. Or any iron or other vitamins or minerals either.

This is a great group to be around, so stick with us :)

ianm Apprentice
ianm
Posted

Welcome. I don't have a formal diagnosis but it is quite obvious that gluten was the thing that made me so sick. I won't get a formal diagnosis because I refuse to eat anymore gluten. The disruption to my life would be too great that it is just not worth it. I've learned a lot from this group and hope you do too.

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board :D This is a great site for support and for any questions you have

mela14 Enthusiast
mela14
Posted

i also had a hsyterectomy...but i think the problem was gluten long before. if i knew then what I know now!

I'm glad that you are feeling better. I am waiting for my biopsy results. An and still not feeling better.......but don't think they will show anything. i had the biopsy done 4 months after going gluten-free. I am also waiting for the DNA results. either way I am not going to eat gluten again....I still have to work on my diet as i have so many other typical food allergies. probably because it took so long to figure out about the gluten.

Guest BellyTimber
Guest BellyTimber
Posted

1. How come she can see flattened villi if the biopsy is "negative"?

2. I'm in the same position as Ian but it means I can't get a doctor's letter to my employers to explain absences, also I seem to be one of those that's taking a few years to bounce back (I hope).

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Guest chickadee
Guest chickadee
Posted

I'm assuming that the villi were starting to get healthy because I was only eating foods that did not say wheat or whole wheat on the label. Also I was making alot of our meals. Potatoe, rice, meat and veggies. We were not eating processed foods. For what ever reason she was amazed that the biopsy came back negative when she could clearly see there was damage and did the second one because the first one came back negative.

:)

Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Brenda:

There are a lot of great people on the board. You will find much useful information.

mela14 Enthusiast
mela14
Posted

got all my results.

dr says the good news is that i don't have celiac!

the biopsy and gene test were negative.

the biopsy looked good.....i had already been gluten-free for 4 months

she said that i could just have an intolerance.....but will never be celiac because i don't have the gene...

in any event i still feel poorly and am bothered by so many foods. so with the test or without it i have to really work on my diet.

nuts, soy, eggs, wheat, dairy and potatoes are all off limits as they make me so sick.

not sure how this all happened but i am so tired of not feeling well after i eat. it makes me sick for days.

right now it feels liek i got the flu.........everythig hurts....gut to muscles.

soy started it and then cashews finished me off. at least i din't have gluten...oh well

here we go again

plantime Contributor
plantime
Posted

{{{hugs, Mel}}} :wub::wub: to feel better soon!

Rikki Tikki Explorer
Rikki Tikki
Posted

Oh Mel:

I know how awful that feeling is! I hope you get your answer soon and that you feel better sooner!

Sally

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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