Biopsy Negative But Doctor Still Thinks It's There

[tgcatmr]

I'd appreciate opinions from others who have had experience with this. I'm 44 and I've gone through so many tests. The blood test was positive for celiac but the biopsy was negative. Now the doctor wants me to go on the celiac diet and see if it helps. In a way I hope he's right because I'd like for something to help, but I have a concern. I'm 5'3" and 86 pounds. Do you usually lose weight when starting this diet, and do you usually have less evergy at the beginning? I just don't see how I can possibly make it through if I lose more weight or energy. Don't get me wrong, I've been skinny and tired for 20+ years, but to get worse... How long before I know if the diet's helping, and what can I do to maintain my weight?

[SillyYakUK]

Hi, when you say you doctor wants you to go on a coeliac diet do you mean a gluten free one? If so you'll probably find (if you ARE a coeliac) that you'll gain weight. Most coeliacs, once they are gluten free for about 2 months start getting their energy back and absorbing more nutrients from their food.

Good luck with your diagnosis, my sister is having the same problems, she shows all the symptoms of my mother and I (we're both diagnosed) but she seems to come up neg on the biopsies, then we found out she naturally cuts gluten out of her diet by not eating bread or pasta etc.

[gf4life]

Hi tgcatmr, I would say try the diet. You are very fortunate to have an openminded doctor in regards to celiac disease. Most doctors take a negative result and tell you you don't have it, and drop the issue. You should start to feel better and gain some weight as Silly Yak UK said, if of course Celiac is your only issue. Many also have problems with dairy and other food intolerances, so watch what you are eating and possible keep a food diary to help you notice what symptoms are occuring after each food you eat. Also, some times there is a delayed reaction. It can be confusing when you first start a gluten free diet, so try to get as much information as possible before you go shopping, and your best bet is to keep it simple, start with basic foods. Good luck, and Happy Eating.

God bless.

[tonileet]

Hi tgcatmr and others,

I've been gluten-free for 5 1/2 months and have gained 13 pounds. I've pretty much gained the amount of weight that I lost. I was skinny and now I'm thin. My weight feels right now. I've started to take exercise walks again to maintain my current weight. I'm hoping that I won't gain much more.

As for what to eat to gain/maintain weight, I regularly enjoy the following nutrient-dense foods: tahini (sesame seed butter), avocadoes, nuts (walnuts and almonds are my favs), seeds (pumpkin and hemp are my favs), shredded coconut (it's delicious in baked goods and in hot cereal), and good oils - olive, flax and hemp (hemp is an excellent source of balanced essential fatty acids). I don't cook with these oils. I use them as a condiment, a drizzle here and a drizzle there over steamed veggies, pasta sauce, chili or whatever. I enjoy tahini (any nut butter would do) on rice cakes, rice bread, and bananas, to name a few favs. Avos are great on rice cakes, too and, of course, in salads.

Go gluten-free, be sure to eat healthy, nutrient-dense foods, and see what happens - you just might be pleasantly surprised! And let us know how you're doing - Toni

[enigma]

You have a very wise doctor. As he/she probably told you, it can depend on the area the biopsy was taken from AND on the experience of who reads the biopsy. I'm also 5'3" and went from 95 lbs. at diagnosis (very sick) to 120 lbs. within a year. I then later ballooned to over 140 lbs. eating too much gluten-free junk food! Don't do that! (Happily I recently took 20+ off to reach a healthy weight of 120 again.) But please do try the diet - if you really have celiac disease then it will help in so many ways! Good luck!

[tgcatmr]

You all have been so helpful. I've started eating gluten free this week end. I really think the doctor's on to something here- everything I read on the net about symptoms of celiac seems to say "me". Thank you so much for the encouragement. One more question- how do you take communion in church? The things you don't think of until you're in the situation!

[DLayman]

Are you in a catholic church?

There are sources for rice hosts..

I would speak with the pastor or whomever and see what you can arrange!

Also you might want to look into the specific carbohydrate diet it might be of great help to you to gain wieght!

There are several sites online. the main one being www.breakingtheviciouscycle.info

You sound like me.. I was 90 pounds wet till I had 4 kids!!!! hehe now I weigh just a little more!

[paulstefano]

The Gluten free diet is not lacking in nutrients. In fact, the western diet, so dependent on wheat flour, is what is mal-nutritious. I think you'll find that by following a gluten free diet you'll actually get more nutrients and thus gain weight. Case in point. I used to love to eat pastries for dessert. Pie, cakes, cookies. Love them. In a gluten free diet, while it's not impossible to eat those things, if made with the right ingredients, it is much harder. Now, I'll typically eat some grapes, or canteloupe fo dessert instead. Much healthier and more nutritious.

[monicanina]

hi... im glad i found this forum! ive been going through a similar confusion. i had positive antibody tests (though i'm not sure how high) after complaining for two years that i'd suddenly developed horrible gas, bloating and discomfort *all the time*, along with lactose intolerance. but when i got my biopsy, the doctor told me it was normal and that was that. ive asked if i should still avoid wheat/gluten - two different doctors have told me "no, you just have IBS" although i've read on the internet so many times that i probably should. ive never tried going gluten-free yet -- that's my next step once i gather the courage -- but one other point keeps throwing me off. i don't believe i have lost weight along with these symptoms, i actually feel more like my digestion is too slow than too fast (ie, i haven't had diahrrea). i'm 25 and i've always been thin, but i definitely haven't gotten any thinner. in the last 5-7 years ive experienced the normal 10-15lb. weight gain that women get as they age. do those with celiac disease always tend to lose weight? does this sound like a different type of reaction? anyone have any advice?

[gf4life]

Not all people get to the point of losing weight due to the diarrhea. I personally was overweight by 60 lbs when I went on the gluten free diet. I gained more weight with each of my three pregnancies and never was able to lose any weight. I think my body was so malnourished that it was holding onto everything I ate. I have now lost 20lbs. in 8 months. The first time in the past 11 years that I have lost weight naturally and I am keeping it off since I have not done anything except cut out gluten and dairy! I don't count calories, or carbs. or limit my sweets. I am eating healthier though since the gluten-free diet is generally more whole foods and less junk.

But most people tend to be in the underweight catagory by the time the damage to the intestines is severe enough to be noticed. I personally was not willing to be sick that long. If you tested positive on the blood tests and negative on the biopsy, either they did the biopsy wrong or you are fortunate enough not to have severe damage yet. I would suggest trying the diet to see if it helps. I'm 32 and had more constipation that diarrhea until about 4 years ago and then it reveresed and I had more diarrhea. Still no weight loss and my doctors all thought I was crazy. I even had one doctor accuse me of taking laxatives to cause the diarrhea! I didn't even take laxatives when I had constipation because I knew the diarrhea was going to follow anyhow.

I guess what I am trying to say is that you body is producing the antibodies for a reason, and that reason is gluten. Please take it seriously.

There was a poll that started last week that asked if there were people who had indications that they might be Celiac but were not diagnosed, and were not told to go on the diet, did they develop full-blown Celiac later in life. You can check it out here:

Open Original Shared Link

God bless,

Mariann

[SparkyClare]

Hello All

I've just tested strongly positive for all the Coeliac blood tests but had a negative biopsy. My doctor thinks I still am probably Coeliac so I'm on the gluten free diet and although initially I saw a great improvement, now I've started having frequent stomach upsets again - often daily for weeks at a time - I've also lost a stone in weight since I started. I'm now wondering if dairy too might be a problem or perhaps I'm not managing to cut all the gluten out. Still not convinced I really am coeliac because the doctors all go on about the 'gold standard biopsy' being the only definitive test and mine was negative.

Fed up and hungry

SparkyClare

[GEF]

monicanina,

My story is very similar to your's. I'm 28 and to tell you the truth, my symptoms have varied quite a lot over the years. What used to be diahrrea all the time, is now bloating and gas and the unpredictable GI upset. My digestive system is pretty slow too.. and I mean slow, but when I eat something my system doesn't like, it'll go right through me. It took me a while to realize that I need to go gluten free. I'm not even 100% on my tests and I still feel I need to.... which I'm going to soon. I've stayed about the same weight, but have recently gain a few (probably because now I have a wedding dress to fit into. hahahaha!) Some are overweight, some under, some normal. I've seen 3 doctors and they all want to give me the IBS diagnosis. I don't accept it, especially because I know that those blood tests are saying that my body doesn't like gluten. IBS is a diagnosis that's given when doctors don't know what's going on. If I were you, I wouldn't accept it. Listen to your body. This time around, I found a doctor that those which celiac recommend. Believe me, it's important that your doctor is familiar with the condition. My 100% opinion is why go on medication with side-effects that make you feel worse than your condition rather than modifying your diet? It's like treating the symptoms and not the cause.

Good luck to you and I'm so glad you're here on the forum. You'll receive a lot of support at whatever stage you're in.

Gretchen

[GEF]

SparkyClare,

I can understand your frustration about the tests. Did you know that you don't have to be full-blown celiac to suffer from gluten? Sometimes when a doctor is doing a biopsy, damaged areas are missed... so I certainly wouldn't rule out celiac based on a negative biopsy. Just because they couldn't find the damage, doesn't mean that it's not there... it could also be at a less-damaged state. Other parts of your body might be suffering too... gluten to an intolerant body is pretty distructive... period.

Sorry, but I can't offer any advise on the recovery stages of the diet yet, but I'm sure there are people here who can.

Gretchen

[lovegrov]

SparkyClare,

If you were positive on all the blood tests and you have symptoms, then the odds are close to 100 percent you have celiac.

richard

[monicanina]

just wanted to post a BIG thank you to those who took the time to reply to me... i've been dealing with feeling sick and terrified of food for almost three years now and i'm fed up with doctors telling me there's nothing i can do about it... i think i am going to develop a plan for going gluten free and i will let you all know how it works out! gretchen, after the wedding cake of course, i hope you manage to try gluten-free too! that sounds *just* like my story and i'm glad to hear i'm not the only one....

i guess it totally makes sense that if i don't have extensive damage to my intestines (yet?) and the biopsy was negative that i wouldn't be having the weight-loss diahrrea that shows up in full-blown celiac disease... i was just confused because i knew that was one of the main symptoms.

thanks again!

monica

[judy04]

Monica....

Just wanted to let you know that my blood test was positive(IGA),

but biopsy neg, have no damage to the villi, yet had a lot of celiac

symptoms, diarrhea, bloating, pain,red and itchy eyes, acid reflux, etc

However, my gene test was neg. After 8mos of gluten-free/df I have no more

pain no symptoms. I have gluten sensitivity!

[SparkyClare]

Thank you Richard and Gretchen for replying. This is a very confusing disease and quite overwhelming for the newly diagnosed and, of course, the newly 'undiagnosed'. Next job is to get my kids tested.