Is It Celiac Or Something Else?

[jennyg]

Hi,

This is my 1st time on here.

I, too had a similar report. I had upper endoscopy and colonoscopy on Sept. 25th. I had lost a lot of weight without trying. That's really the only symptom besides a dull headache I was having everyday. I was thinking it was all due to going thru "the menopause". I was also having mild anemia, but my iron levels were not below normal and I was not lacking in any of the other vitamins she tested for (like folate, B12, etc.) Also, my white blood cell count was a little below normal. They said that could flutuate. hmmm..

When I got a copy of the report it said:

Abnormal mucosa in the duodenum compatible with nodularity duodenal bulb; relatively flattened mucosa D2

(cold forceps biopsies performed for histology at the D2 r/o sprue)

In my followup appt with the doc all she could say was it came back negative and "it didn't show up under a microscope". Then she said I should get more calories in my diet, like 3000 calories a day of anything I wanted and come back in 3 months. She did recommend seeing a dietician (which my insurance won't cover because I have no diagnosis). Dietician said she thought it sounded like Celiac. So, I've been on a gluten free diet (trying, anyway) for 3-1/2 weeks. Have not gained any weight, but don't have the headaches. hmmm...

I really need advice or support from someone going thru the same thing. Some people don't believe I should be on this diet if the doctor doesn't say I should.

Thanks to anyone for listening

[YoloGx]

Hi,

This is my 1st time on here.

I, too had a similar report. I had upper endoscopy and colonoscopy on Sept. 25th. I had lost a lot of weight without trying. That's really the only symptom besides a dull headache I was having everyday. I was thinking it was all due to going thru "the menopause". I was also having mild anemia, but my iron levels were not below normal and I was not lacking in any of the other vitamins she tested for (like folate, B12, etc.) Also, my white blood cell count was a little below normal. They said that could flutuate. hmmm..

When I got a copy of the report it said:

Abnormal mucosa in the duodenum compatible with nodularity duodenal bulb; relatively flattened mucosa D2

(cold forceps biopsies performed for histology at the D2 r/o sprue)

In my followup appt with the doc all she could say was it came back negative and "it didn't show up under a microscope". Then she said I should get more calories in my diet, like 3000 calories a day of anything I wanted and come back in 3 months. She did recommend seeing a dietician (which my insurance won't cover because I have no diagnosis). Dietician said she thought it sounded like Celiac. So, I've been on a gluten free diet (trying, anyway) for 3-1/2 weeks. Have not gained any weight, but don't have the headaches. hmmm...

I really need advice or support from someone going thru the same thing. Some people don't believe I should be on this diet if the doctor doesn't say I should.

Thanks to anyone for listening

Hi Jenny,

Welcome to celiac.com! You should find it a very informative and supportive place. Many people here have had your same problems and been helped.

I suggest you stay off gluten and trace glutens entirely for say three to six months and then challenge it by having some gluten (for some its a year). Its also very possible that the endoscopy wasn't accurate since sometimes its hard to find the right place where it lies in the intestines. Its also possible to have celiac like symptoms elsewhere than in the intestines....If you respond negatively to gluten its very likely you have celiac though to determine that you need to be like a detective.

You might feel better being off gluten whether or not you have celiac. Many have an allergy to gluten that is not a full blown case of celiac--plus gluten isn't fully digestible for anyone. If its simply an intolerance its an easier way to be since its a lot less inconvenient say when you are travelling or eating out since then CC wouldn't really be a factor.

Nevertheless it is good to figure out what your body can and can't handle since celiac can cause a variety of degenerative diseases (including cancer, heart disease, kidney disease, glaucoma, schizophrenia and dementia etc. etc.) and possible other autoimmune disorders. Fibromyalgia like symptoms and RA as well as Lupus and Schogrens are very common for instance. If you feel better without gluten however go for it. If you need to avoid trace glutens even that can be figured out too--by avoiding them also for the 3 to 6 months or more and then challenging that eventually.

Its also very possible you have other or additional food allergies or food sensitivities that could be causing the weight loss. Celiac makes your intestinal walls more permeable so undigested proteins go into the blood stream, which then overloads your liver with the resultant toxicity plus it causes inflammation elsewhere (like those headaches). You then can easily become allergic to all kinds of things. Its best to try and figure out what those might be. Recently for instance I discovered I am intolerant to fruit as well as the nightshade family (potatoes, tomatoes, peppers). Many here have other grain intolerances and have to follow a low specific carbohydrate diet.

I have found a variety of basic herbs also helps like marshmallow root caps and dandelion caps and ideally yellow dock or oregon grape root caps (or boil the herb) help heal the lining of the intestines and deal with the toxicity to you liver, skin and intestines etc. Don't use alcohol based tinctures since they have gluten in the alcohol usually.

Don't be shy about asking questions.

Good luck!

[jennyg]

Hi Jenny,

Welcome to celiac.com! You should find it a very informative and supportive place. Many people here have had your same problems and been helped.

I suggest you stay off gluten and trace glutens entirely for say three to six months and then challenge it by having some gluten (for some its a year). Its also very possible that the endoscopy wasn't accurate since sometimes its hard to find the right place where it lies in the intestines. Its also possible to have celiac like symptoms elsewhere than in the intestines....If you respond negatively to gluten its very likely you have celiac though to determine that you need to be like a detective.

You might feel better being off gluten whether or not you have celiac. Many have an allergy to gluten that is not a full blown case of celiac--plus gluten isn't fully digestible for anyone. If its simply an intolerance its an easier way to be since its a lot less inconvenient say when you are travelling or eating out since then CC wouldn't really be a factor.

Nevertheless it is good to figure out what your body can and can't handle since celiac can cause a variety of degenerative diseases (including cancer, heart disease, kidney disease, glaucoma, schizophrenia and dementia etc. etc.) and possible other autoimmune disorders. Fibromyalgia like symptoms and RA as well as Lupus and Schogrens are very common for instance. If you feel better without gluten however go for it. If you need to avoid trace glutens even that can be figured out too--by avoiding them also for the 3 to 6 months or more and then challenging that eventually.

Its also very possible you have other or additional food allergies or food sensitivities that could be causing the weight loss. Celiac makes your intestinal walls more permeable so undigested proteins go into the blood stream, which then overloads your liver with the resultant toxicity plus it causes inflammation elsewhere (like those headaches). You then can easily become allergic to all kinds of things. Its best to try and figure out what those might be. Recently for instance I discovered I am intolerant to fruit as well as the nightshade family (potatoes, tomatoes, peppers). Many here have other grain intolerances and have to follow a low specific carbohydrate diet.

I have found a variety of basic herbs also helps like marshmallow root caps and dandelion caps and ideally yellow dock or oregon grape root caps (or boil the herb) help heal the lining of the intestines and deal with the toxicity to you liver, skin and intestines etc. Don't use alcohol based tinctures since they have gluten in the alcohol usually.

Don't be shy about asking questions.

Good luck!

[jennyg]

Thanks so much for the information.

This is all so new to me and any insight

is appreciated.

The diet is kind of overwhelming.

I had no idea that gluten is in so many products.

I guess most people (especially me) have no idea what

they are putting in their bodies

when buying all the easy prepared foods.

Thanks again!

[YoloGx]

Thanks so much for the information.

This is all so new to me and any insight

is appreciated.

The diet is kind of overwhelming.

I had no idea that gluten is in so many products.

I guess most people (especially me) have no idea what

they are putting in their bodies

when buying all the easy prepared foods.

Thanks again!

You are quite welcome. There are lists on the home pages of celiac.com that tell you what to avoid and what not. Some are more sensitive than others. I happen to be one of the ultra sensitive ones, but not everyone is. You can also use the search engine to find out info. on a variety of topics people have posted on this site. It is complicated at first, especially all the cross contamination (CC) and trace glutens found even in asperin etc.

I used to think I was gluten free but wasn't. I was still making myself with all these trace glutens and CC. So therefore the detective business. However it does get easier over time...Even eating out. Local celiac boards can be very helpful since members often list places its easier to buy gluten free food and restaurants that have a gluten-free menu.

The main thing at first is to eat simply and with less sugar (often one has candida or fungal overgrowth with this condition) and probably no milk products since most with celiac need to avoid milk at first until their intestines heal.

Bea

[LizMonte]

Hi, I'm a newcomer to this forum, also. I joined because I was just diagnosed with gluten intolerance/celiac with a simple genetic test. I have MS, but so far no particular digestive disorders. So I'm doing what you're doing -- cutting the gluten out of my diet. And I agree with you, it's hard at first. I can see that I'm going to be doing a lot more cooking from scratch instead of using convenience foods.

The genetic test was done by Entero Lab. (www.enterolab.com) They have also developed a non-invasive stool analysis which is supposed to be more sensitive than the standard blood test. They say that most of the immune response to gluten happens in the gut, so testing the stool makes sense.

The really good news is that you don't need a doctor's order to get the tests done, and they are relatively inexpensive.

This could give you a definite answer as to whether or not you have celiac.

Liz