Help!

[Janiney]

Feeling really frustrated, miserable and defeated as I just recieved the results of my endoscopy biposy today.

On the day I had the endoscopy, the inital findings were gastritis (inflammation in the stomach), duodenitis (inflammation in the small intestine), 'nodulation' of the duodenum and a small erosion in the mucosa of the duodenum.

I've waited 5 weeks for the biopsy results (I'm in England by the way) and after days and days of pestering my surgery the receptionist finally called to say the biopsy is 'normal'... she said she couldn't give me any more info on exactly what the results showed. I'm devestated!

I have been gluten free for 5 weeks now, since the endoscopy. My symptoms before going gluten free were:

- fatigue, drowsyness, low mood, hungover feeling

- irritability

- nausea especially after meals

- sore stomach and abdomen

- indigestion, major bloating, gas, heartburn, reflux

- stomach and abdomimal cramps

- daily painful constipation... resulting in piles and fissures

- D immediately after eating any dairy (lactose intolerent)

- flu like feeling, brain fog, dizzy, disorientated, anxious

- unable to focus/concentrate

- weak muscles, sore joints especially knees, worse at night... I have to sleep with a pillow between my knees

- itchy, stingy weeping rash on elbows, knees, legs, hands and forearms... not confimed as DH but looks like the pictures I've seen... I have an appointment with a dermatologist to take a skin biopsy tomorrow

I've had these symptoms to various degrees since I was about 16, and some of them even as a child. I've seen many doctors over the years who just tell me I have IBS or a 'virus' or anxiety/depression (which I don't). Things got really bad after having my son and that's when I started this long process of trying to find out what exactly my problem is.

Bascially, I'm 23 but I feel 93! It's really hard as I have a son who's almost two and I'm desparate to get well so that I have the energy to enjoy life with him!

After cutting out gluten my indigestion, bloating, burping, reflux and heartburn immediatly cleared up.... as did the constipation. All the other symptoms remain to the same degree if not worse!

I had a blood test for celiac prior to the endoscopy, which was apparently negative. The doctors don't give me any info on exactly what they tested for so I'm none the wiser!

I would say I was eating a 'light' amount of gluten before the biopsy for about 4 weeks, I tried to eat a lot of it in the preceeding two weeks even though it made me feel awful... could that have made my gut heal a little?

Can anyone give me some advice on what to do next? Should I push the doctors to tell me what the biopsy findings were EXACTLY and what the blood tests actually were for? Could I have celiac even if the biopsy is negative? The medical profession are so cold, and seem content to just leave me as I am and keep fobbing me off rather than help.

[Lisa]

Welcome to the Club!

There are no conclusive tests with the exception of a positive dietary results. I believe you have your answer.

The neurological symptoms will clear up with a continued gluten free diet.

Everything you would like to know can be found on this site. Again, welcome.

[mftnchn]

I'd request copies of the actual lab results. Do you have that legal right? We do, in the USA, we can't legally be refused that information.

Be sure that your skin biopsy is of a draining, weeping pustule if possible. If it is positive it will be conclusive for celiac, which may be a relief to you.

It sounds to me that you already know you need to be gluten free. I'd just go full ahead with the diet being as strict as possible. Then wait it out, as the other symptoms may clear up if given enough time. 5 weeks is still early, and you have already had dramatic improvement of some symptoms.

If things don't slowly improve (and it might be a very up and down course with overall gradual improvement as you look back) then eventually you may need to explore other factors.

Not having the clear diagnosis is sometimes hard because it takes time to confirm and because you may need to also look for other causes of your symptoms.

For me, it was almost a year gluten-free before I begin to call myself celiac and be sure that indeed I was. (no chance to do blood tests and biopsy)

[ShayFL]

Eliminating Dairy and Soy for a few months helps many speed healing and clear up other symptoms. Worth a try. Wishing you well.

[Gemini]

Feeling really frustrated, miserable and defeated as I just recieved the results of my endoscopy biposy today.

On the day I had the endoscopy, the inital findings were gastritis (inflammation in the stomach), duodenitis (inflammation in the small intestine), 'nodulation' of the duodenum and a small erosion in the mucosa of the duodenum.

I've waited 5 weeks for the biopsy results (I'm in England by the way) and after days and days of pestering my surgery the receptionist finally called to say the biopsy is 'normal'... she said she couldn't give me any more info on exactly what the results showed. I'm devestated!

I have been gluten free for 5 weeks now, since the endoscopy. My symptoms before going gluten free were:

- fatigue, drowsyness, low mood, hungover feeling

- irritability

- nausea especially after meals

- sore stomach and abdomen

- indigestion, major bloating, gas, heartburn, reflux

- stomach and abdomimal cramps

- daily painful constipation... resulting in piles and fissures

- D immediately after eating any dairy (lactose intolerent)

- flu like feeling, brain fog, dizzy, disorientated, anxious

- unable to focus/concentrate

- weak muscles, sore joints especially knees, worse at night... I have to sleep with a pillow between my knees

- itchy, stingy weeping rash on elbows, knees, legs, hands and forearms... not confimed as DH but looks like the pictures I've seen... I have an appointment with a dermatologist to take a skin biopsy tomorrow

I've had these symptoms to various degrees since I was about 16, and some of them even as a child. I've seen many doctors over the years who just tell me I have IBS or a 'virus' or anxiety/depression (which I don't). Things got really bad after having my son and that's when I started this long process of trying to find out what exactly my problem is.

Bascially, I'm 23 but I feel 93! It's really hard as I have a son who's almost two and I'm desparate to get well so that I have the energy to enjoy life with him!

After cutting out gluten my indigestion, bloating, burping, reflux and heartburn immediatly cleared up.... as did the constipation. All the other symptoms remain to the same degree if not worse!

I had a blood test for celiac prior to the endoscopy, which was apparently negative. The doctors don't give me any info on exactly what they tested for so I'm none the wiser!

I would say I was eating a 'light' amount of gluten before the biopsy for about 4 weeks, I tried to eat a lot of it in the preceeding two weeks even though it made me feel awful... could that have made my gut heal a little?

Can anyone give me some advice on what to do next? Should I push the doctors to tell me what the biopsy findings were EXACTLY and what the blood tests actually were for? Could I have celiac even if the biopsy is negative? The medical profession are so cold, and seem content to just leave me as I am and keep fobbing me off rather than help.

Take a moment and relax! I know how crappy you feel as I've been there myself but it will get better.....as you have seen already with your dietary response. A few things to consider.....

I would say that you have celiac disease, without a doubt. Negative blood work and biopsy results are not uncommon, especially as you are so young. At 23, you may not have developed severe enough damage to show on medical testing, which is a good thing. Sometimes it takes years of eating gluten for damage to show. I started with symptoms early in life and was not diagnosed until I was 46 years old...by then I had total villous atrophy.

You do not want it to get to that stage, believe me! However, some erosion and inflammation were noted

visually so you were at the beginning of it all and that's a great time to catch it.

As for your skin rash, from what I have read about DH, it is important that the biopsy be taken from skin NEXT TO the lesion, not a biopsy of the lesion itself. They are looking for IgA deposits in your skin and the inflammation that occurs at the site of rash will interfere with the results. A good dermatologist, experienced in

DH testing should know this. If you get a positive diagnosis for DH, you have Celiac Disease, period. That is considered a diagnosis, even if they tell you your internal biopsy is negative.

The more pronounced GI symptoms generally subside very quickly, once gluten is removed. Your other symptoms, esp. neuro, may take more time to go away. You need to knock the inflammation way down and then heal some before the other symptoms will subside completely. I could not even read a book 4 years ago because the brain fog and confusion were so bad. 3 1/2 years after going gluten-free, I can rip thru 800 page novels so things will improve and your health will come back IF you follow the diet scrupulously.

You said you got really bad after the birth of your son? Pregnancy can be a huge trigger for celiac disease or make symptoms go out of control because pregnancy suppresses your immune system. These are all clues to add to the pile of evidence, even though your doctors in the UK do what many American doctors do....negative biopsy? Then you don't have celiac disease! Wrong!!!!!!!!

Trust in yourself and what you have learned from your dietary trial. I know many in the UK would want a "proper" diagnosis because, and correct me if I am wrong, you can get a prescription for food that will be paid for by National Health. Forget that.....there are many great recipes here and in books that will make the diet easy for you and you can blow off the doctors and get your health back. Remember also, that your child will have to be watched for signs that he may develop celiac disease. It's genetic so the risk is there.

Good luck to you and trust your instincts....you need to go gluten-free and stay that way so you can return to a 23 year old body!

[nora-n]

Hi , I was back on gluten for five weeks and the biopsy was negative.

I went gluten-free afterwards as my syptoms started to come back at the six week point....

I read articles and abstracts, and the earliest reported positive biopsy after re-introducing gluten was six weeks....six weks to six months. And one needs to eat at least 0,3 grams of gluten er kg weight. That would be at least 21grams if weighing 70 kg.

My daughter had a negative biopsy too , after six weeks back on gluten. Her smal intestine was abnormal and the doctor called the others to see. They only took two samples and only examined one of them. Newer guidelines say at least 12 samples, I saw in a posting that one mother reported they took 15 samples in a hospital in London because of these new guidelines.

After seven months gluten-free, I woke up one day and was not totally fatigued anymore.

I read somewhere one can ask for a second opinion on the biopsy slides. If you go to thefooddoc's blog, (Scot Lewey) he says more than two neutrophils on each villi are suspicious. Some pathologists still demand total villous atrophy to diagnose celiac.

nora

[Janiney]

Just noticed I'd forgotten constant mouth ulcers and runny nose on that huge list of symtoms!

Thanks to everyone for the replies, it's really helpful to have the advice and perspective of others and I'm feeling a little bit clearer about the whole thing now.

It's really interesting about the amount of time/gluten amount you need to shown damage. I certainly think I may have jepodised my result by being gluten lite and gluten free at times for several months before my biopsy. And the fooddoc blog helped too.

I think if I go back to my doc I'll ask to see exactly what bloods were done and the exact result of my biopsy.

I've decided to pretty much go it alone as my doctors seem to be completely clueless. I wanted a proper diagnosis for my own peace of mind, so that I could be sure I was doing the right thing and to prove to myself and others that I really have been genuinely ill all this time!

My skin biopsy has been canceled by my dermatologist and moved to October 1st, so I'm still waiting for that. Meanwhile my symptoms seem to be really up and down, easing for one day and horrible again for the next. Yesterday I had horrible stomach cramps and then diahorrea, very moody with skin flaring up even though I hadn't eaten anything unusual for me, and the previous day I had constipation.

I'm crying a lot and feeling despairing because I just don't know what to do for the best. My stomach and small intestine region still feels very sore, achy and inflammed inside. Seems as though everything I eat irritates it.

I'm thinking about the SCD, but as I'm already vegetarian and intolerent to milk and cheese, looking at the list of illegals I feel like I would only be left with fruit, veg, eggs and nuts! I really don't think I could do that. Would doing a mild version of the diet have any impact? A lot of the info on the SC diet talks about it helping the diahorrea... I only have diahorrea occasionally and constipation is my main complaint, can it be any good for constipation?

I plan to cut out soy to see if that makes any difference. I think I may still be getting contaminated with gluten making my little boy's food, we have our breakfast together, I have ricecakes and he has toast, I'm careful to keep things separate when making our food but when he drops it I pick it up and give it to him and the continue to eat my food (with my fingers!), can this be enough to keep the inflammation in my stomach/intestine going?

[mftnchn]

I am on SCD and my main complaint is constipation as well. On www.pecanbread.com in the dealing with difficulties section, there is a constipation protocol as well.

The SCD literature says it is not impossible to do the diet vegetarian. If you have the option to reintroduce meat proteins that might be important to your healing process, though.

With digestive problems, there can be a lot of imbalances and infections. Eating more carbohydrate based diets can be problematic for these. In addition, some of us have carb digest issues secondary to celiac because the villi produce at least 3 carb digest enzymes.

On the SCD some people have been able to reintroduce dairy. Goat's milk seems better tolerated.

[nora-n]

I get sick if I touch gluten and then touch my food without washing my hands with water and soap.

Be sure to get a biopsy for DH done during an outbreak. Mine was negative, and it should have been done in a different place, not somewhere where there have been outbreaks as the IgA there has been used up.

nora