Diagnosis

[lc1333]

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

[Lisa]

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

If you were tested and had villi damage, I would, for the time being consider it a gluten issue as well as a bacteria overgrowth.

Try the diet for at least two months with true dedication and my guess is that you will feel tremendously better. If you DO have a positive dietary results....you have your answer.

Start simple with meats, seafood, rice, potatoes, fresh veggies and fruit. Limit your spices and limit your dairy(temporarily). We can help you with options if this is your choose or direction.

The bottom line is to feel better and this might be a good step toward good health.

And welcome!

[lc1333]

If you were tested and had villi damage, I would, for the time being consider it a gluten issue as well as a bacteria overgrowth.

Try the diet for at least two months with true dedication and my guess is that you will feel tremendously better. If you DO have a positive dietary results....you have your answer.

Start simple with meats, seafood, rice, potatoes, fresh veggies and fruit. Limit your spices and limit your dairy(temporarily). We can help you with options if this is your choose or direction.

The bottom line is to feel better and this might be a good step toward good health.

And welcome!

Thanks for the advice...

I'm gonna try this. The one thing I am afraid of, which I guess I shouldn't be, is that almost 4 years ago I quit drinking soda to lose weigh (totally robbed on that one, didn't lose a pound), then when I did try to drink it, it made me violently ill, then any sugared drinks began to make me ill for days, now the only thing I can drink is water, everything else makes me so sick. I'm so afraid that when I limit my diet, it'll just get more and more restricted till I can only eat chicken and carrots or something. I guess I'm just whining, but I do like food, and I feel like I'm losing that. It's kinda depressing actually. But on the other hand, I'm so tired of the cramping and pain and diarrhea, I know I should be grateful I have a potential answer, it's just hard. I'm also very low income with four kids, so it's not like I can afford to go buy gluten-free food, I just gotta eat what I have available. I know I'm pouting, I apologize...

[ciamarie]

For the most part, if you start feeling better on a gluten-free diet, your list of foods that you're sensitive to should go down as your digestion heals.

[beachbirdie]

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???

You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet.

Basically these diets shun most simple carbs (no rice, potatoes, other grains/seeds of any kind), limited or no dairy, no sugars or other sweeteners except for honey) and rely on nuts, meats, veggies and fruits. By their nature, they are also gluten-free.

Just something to consider, not saying it fits everyone, and not making any medical recommendations since I am not a medical professional.

[lc1333]

You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet.

Basically these diets shun most simple carbs (no rice, potatoes, other grains/seeds of any kind), limited or no dairy, no sugars or other sweeteners except for honey) and rely on nuts, meats, veggies and fruits. By their nature, they are also gluten-free.

Just something to consider, not saying it fits everyone, and not making any medical recommendations since I am not a medical professional.

Thanks for the suggestion. I found the SCD on the SIBO (small intestinal bacterial overgrowth) site. I actually did start the diet yesterday. It's kinda bizarre to think about - I haven't had any grains, dairy, or sugar in the last 48 hours. And surprisingly enough, other than a headache (which I have quite often anyway) I feel ok. My stomach has been it's normal crampy self, but nothing worse than I'm used to. I'm guessing I will continue to feel this way until my intestines heal??? Today I'm really craving chocolate and I'm getting kinda desperate, but I've kinda gotten to a point where I feel like I am just poisoning myself every time I eat any breads or chocolate.

I guess I'm kinda confused about the diagnosis thing though...The doc said I have the intestinal damage indicative of celiac, but not the blood work, so no celiac?? And I've also read that Celiac can cause SIBO??? But not the other way around - SIBO doesn't cause intestinal damage...so I don't know, and she doesn't even seem to entertain anything other than long term antibiotics. And I don't think I can do that.

[beachbirdie]

Thanks for the suggestion. I found the SCD on the SIBO (small intestinal bacterial overgrowth) site. I actually did start the diet yesterday. It's kinda bizarre to think about - I haven't had any grains, dairy, or sugar in the last 48 hours. And surprisingly enough, other than a headache (which I have quite often anyway) I feel ok. My stomach has been it's normal crampy self, but nothing worse than I'm used to. I'm guessing I will continue to feel this way until my intestines heal??? Today I'm really craving chocolate and I'm getting kinda desperate, but I've kinda gotten to a point where I feel like I am just poisoning myself every time I eat any breads or chocolate.

I guess I'm kinda confused about the diagnosis thing though...The doc said I have the intestinal damage indicative of celiac, but not the blood work, so no celiac?? And I've also read that Celiac can cause SIBO??? But not the other way around - SIBO doesn't cause intestinal damage...so I don't know, and she doesn't even seem to entertain anything other than long term antibiotics. And I don't think I can do that.

I'm surprised your doctor didn't call it celiac after seeing the damaged villi. That is still considered the "gold standard" of celiac investigation. False negatives are very common in the bloodwork. This forum is heavily populated with people who had negative bloodwork and positive intestinal biopsies. There are many others who do not fit the "classic" mold, yet the dietary changes gave them healing.

Though not technically "legal" on the SCD diet, you may be able to add unsweetened cocoa/chocolate back to your diet at some point. My daughter-in-law is so grateful that her body had allowed her this! She has figured out how to make scrumptious, fudgy brownies using almond flour, honey, and unsweetened cocoa. But I would follow the diet strictly for at least a month before trying the cocoa.

And it's hard at first, but stick with it! It can take a year or more to completely heal the gut from SIBO.

[domesticactivist]

Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit. You starve off the bad guys and introduce the good guys.

[lc1333]

Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit. You starve off the bad guys and introduce the good guys.

Thanks for all of the great advice!

I have talked to so many people in the last couple of days because I really reached a point of complete intolerance of all of this (ha!! I made a joke!!! get it - intolerance?!?!)

Anyway, I have called other doctor's offices and talked to the nurses there, who talked to the docs, I've talked to y'all, I've talked to a couple of nutritionists and everyone agrees - I have most likely have celiac disease since I had a positive biopsy, and that the bacterial overgrowth issue is probably caused by the celiac completely screwing up my intestines. I'm not really sure just why my doc said I didn't other than that she is not familiar with celiac disease at all. And I don't know what else I could do to verify a diagnosis...

So, I'm gonna go on the gluten free diet, which is quite a bit more liberal than the Specific Carbohydrate Diet I had been on for the last two days. I was really afraid to eat bread today, even gluten free bread, I am so glad I didn't get sick afterward!!! YAY!!! When I think about it, it seems really odd to think that if I just stick to this diet, I won't be sick like that ever again (within reason). I remember being 5 years old and my babysitter giving me pepto bismol because I was sick after I ate, I don't ever remember a time not being afraid to eat...it's kinda exciting!!!

[nora-n]

at least 20-30% of biopsy diagnosed celiacs have negative blood tests.....according to literature. Even more with patchy celiac.