Almost Diagnosed, Plus Some Questions About Celiac

[MarkR555]

Hi guys,

I have been suffering from bad GERD (very sore stomach / esophagus) for the last 2 years since I had a nice visit back to my hometown that involved a lot of drinking and ibuprofen for hangovers. The gerd has gotten pretty bad and is disrupting my sleep and i'm in pain 75% of the time. I also have been investigated for having Ankylosing Spondylitis since I have a lot of joint pain especially inflammation in my lower back / sacrum area which has been very very bad a couple of times.

Last Friday my gastro said the results of a biopsy on my duodenal area said I have villous atrophy which strongly suggests I have celiac disease. He took some bloods which if come up positive for certain things will confirm the diagnosis in his eyes. I have been reading up a lot this weekend and I am fairly sure I have this disease which i'm happy about because it means I can treat all the stuff that has seriously reduced my quality of life for the last couple of years. I was just wondering if there were many other causes of villous atrophy? I don't want to get my hopes up I have this diease (sounds odd I know).

Luckily I eat very little bread and pasta and cook my meals from fresh ingredients most of the time, and eat little processed food. It still looks like it's going to be tough to be gluten free though.

A couple more questions: I drink at least one pint of milk a day (cereal, protein shakes) and was wondering - even if I am lactose intolerant, drinking milk is not going to stop my gastric system healing up is it? Frankly I can put up with the odd bit of D and cramp or something until my major symptoms are gone and i'm a bit healed up. So drinking milk won't hurt my healing even if it does cause me some other symptoms, i.e.e if i'm lactose intolerant having dairy isnt the same as having some gluten is it? Cutting dairy from my diet would be a more major change than the gluten for me I think.

I am 24 (25 next month) and was wondering how normal was to be diagnosed at this age? Am I going to struggle or take a long time to heal up after going gluten free? How about the striffness and inflammation in my joints (thats if it is related to celiac)?

One more: I normally have 4-5 weetabix (a shedload of wheat) for breakfast each morning which means my gluten consumption is probably through the roof. If I go gluten free but slip up occasionally my gluten consumption will still be very tiny in comparison. I know even a small amount can cause celiac problems but will I be able to feel some benefits and heal a little to begin with because my gluten is way way down or does it have to be at 0 before I get any results to start with?

Thankyou for your patience, this looks like a wonderful resource/community here.

Cheers,

Mark

[ToriMartin]

Hi Mark,

I'm new but will do my best to help

You want 0 Gluten, even a slip up. If milk is bothering you, 0 on that also.

It's just not worth it... & all it takes is alittle bit...

What worked for me is going on nothing but Meat & Veggies for 5 or 6 days, not even fruit incase fructose bothers me also. After that time I introduces milk & could feel the bloating, cramping & IBS the next morning. A few days later I accidentally eat something with alittle gluten in is (jerky of all things), had the same reaction. Fruit doesn't bother me. I found that Avacado gives me sinus pressure & a headache. Corn bloats me & makes me pack on weight. Anyhow, it's important to figure out what affects you & stay away from it. No cheating, not worth it. This is your heath which is the most important thing!

We don't eat fast food or processed foods here either. What was difficult is staying away from sauces... But I cook with olive oil, himalayan salt, pepper & garlic still so that helps. I'm not a big bread eater & been allergic to some wheats for years. Ive had major probs for 12 years & kept getting worst.

I've been on the diet about 5-6 weeks now & very happy with myself that I'm doing so well. It's really not that hard if you think of the fact that you will feel better, will take time though...

I read that sensitivities that are from the glutening will go away after about 6 months. 6 months is nothing... With the stuffiness & aches I have noticed a big difference! I've even managed to scratch my husbands back for long period of time & not get sore or tired! However, I believe I was glutened about a week ago & still sore from it... It's taken awhile... But will go away again.

It takes a long time for us to notice a difference... But some people are luckily & notice right away. This board helps allot & so much support!

Stick to the diet & don't give up! You can do it!

Good Luck!

Tori

[cassP]

sounds like you have celiac to me Mark- so, you're already done with your endoscopy & blood tests????? if i were u- i would cut all wheat & gluten out now... if you're one of those people who needs the official diagnosis to start the diet- then please consume very very very minute amounts.

and YES- the Dairy is BAD- if you've got GERD, and villous atrophy- then YES- the DAiry will inhibit your healing.

believe me - i know it's almost impossible to give it up- i havent been able to yet- but i HAVE TO soon- cause it's hurting me.

now, im no scientist or doctor- but i believe i read somewhere that on our villi is where the enzymes might be to digest lactose- so that when they're damaged- people become lactose intolerant. there's a girl on this forum that said after quite some time of being gluten free- & dairy free- she was able to digest lactose again... so MAYBE you could have it in the future ???

[mushroom]

Yes, Tori is right, zero gluten means -0- gluten, at least intentionally. We all slip up once or twice at first before we learn where gluten hides. You will find that once you eliminate gluten your body is so relieved that it will react even more strongly to smaller amounts when it encounters it again. That is the second reason for the zero tolerance policy. The first is that, of course, you want to heal as quickly as possible and every little bit does set you back somewhat.

If you are intolerant to lactose, and with villous atrophy I would expect you to be, then if you expect your gut to heal quickly you will have to eliminate that too. The enzyme that digests lactose is made on the tips of the villi, so you won't get that enzyme back until your villi heal. But there are plenty of other milks out there. There are milks made from rice, from almonds, from soy (although I wouldn't recommend soy right off the bat) and in the U.S. there is even hemp milk that are quite delicious to have with your new gluten free cereal in the morning in place of those 4-5 weetabix (that was a pretty heavy gluten load right there! ) But it looks like you might be in U.K. so don't know what they have there. We don't get hemp in New Zealand (something to do with the dope connotation I think; not allowed to grow it )

You might be one of the lucky ones whose AS symptoms resolve once free of the gluten. If you are RA sero-negative and have not had them for long chances are quite good, but if you cheat the symptoms will probably flare on you. Good news is that there is gluten free pizza and beer, to a greater or lesser degree depending on where you are. The beer is brewed from sorghum and is quite decent. The gluten free breads range from decent to horrible; companies generally do a better job with biscuits and sweet things, but better to start off without the gluten substitutes unless you absolutely HAVE to have cereal for breakfast. Shop the outsides of the supermarket for fresh produce and meats, eat some rice and fish, things that are easy to digest for your damaged gut, and give it a chance to heal. You should notice an immediate difference, at least within a couple of weeks, but do expect to have ups and downs because you can't just turn off the gluten tap and be healed right away.

Good luck on your new lifestyle

[Kay DH]

I've been gluten-free since getting the flu last fall. gluten-free is for life; even if your symptoms subside there can still be damage. Once your villi heal then they will be better able to process milk sugars and protein. If the lactose caused you problems you might be able to drink milk with lactaid. My tolerance for gluten is much much lower than when I first went gluten-free, even minor cc results in symptoms. I went gluten-free not because of my GI symptoms, but because I suddenly developed inflammatory arthritis in my hands. After going gluten-free my GI problems mostly resolved in a few days, and the arthritis went away in 1.5 months. I don't know if I have Celiac, probably do and it started in October, but all of my tests have come back negative. My tests were also flawed in that the blood tests were after I went gluten-free. My GI dismissed Celiac as a possibility because I wasn't sick enough, he even dismissed the rashes that I have had for a few decades. I was only on the gluten-full diet for 1 week before the endoscopy and the GI only took 1 biopsy, which was negative. Only positive was for minor asymptomatic gerd. It takes a while for the gluten-free reality to really take hold. Gluten is hidden in many foods. It is good that you eat minimal processed foods, but you will need to be vigilant for "processed in a plant that also processes wheat...", hydrolyzed vegetable protein, some "natural flavors", and the list goes on. Life is much better being gluten-free. I'm a much stronger biker now and don't seem to get colds as frequently.

[cassP]

My GI dismissed Celiac as a possibility because I wasn't sick enough, he even dismissed the rashes that I have had for a few decades.

so tired of our docs not knowing about Celiac.. of course in their defense Big Pharma doesnt teach them about it in school- still- they have google like we do

i just read an article out of Columbia University- that ONLY 1 in 6 Celiacs have gut symptoms!!!!

[sb2178]

26, diagnosed this spring. Yes, aim for absolutely none. It's tricky for the first month but remember that you are uncomfortable, and this will make you happier. Joint pain for me was mostly gone after about 6 week, probably totally gone about about 8-10 weeks.

Use a fake milk in the beginning. Try cutting the dairy for 4 weeks, then sit down and drink a full glass of milk on an empty stomach. See how you feel. Eliminate it again for another month, then try again. Ditto. I think a lot of people are good after about 3-6 months. It's better to also eliminate cheese/yogurt, but you may be able to be more flexible about that.

Good luck.

[MarkR555]

Thanks for the replies everyone. I understand I need to be totally gluten free I was just wondering if i'll get some benefit from massively reducing my gluten at first which is what will happen when I first do the diet (but probably have a couple of slip ups). Dairy wise I will go with lactose free milk which is the only dairy I have apart from cream I use in sauces and the odd bit of cheese (which I will drop).

Do people tend to put on weight as they start to heal up and absorb things better? I go the gym a lot and eat a lot of calories and plenty of protein and noticed I have to eat significantly more than others.

What I am most looking forward to is a glass of wine with my dinner if my gut manages to heal up properly. Not being able to have a quiet drink has really hurt my social life. I think tomorrow I will have a burger somewhere as my last ever deliberate gluten meal.

Looking forward to feeling better though.

[mushroom]

You will probably find that you will still be able to enjoy a glass of wine

[zero]

Do people tend to put on weight as they start to heal up and absorb things better? I go the gym a lot and eat a lot of calories and plenty of protein and noticed I have to eat significantly more than others.

I think tomorrow I will have a burger somewhere as my last ever deliberate gluten meal.

I work out everyday and lost an unusual 6 pounds when symptoms started and gained them back a year later after I was diagnosed. I'm not convinced all of those pounds were fat so your gym results may improve as your gut heals.

My last official gluten meal was a burrito (sigh).