So Confused

[blc40]

I have gotten my biopsy results back today and they came back negative for Celiac ! I am so confused I had bad stomach pain and anxiety for a month for test . some oily loose stool after eating certain foods, most noteably corn ctrach in gravy sent me right into the bathroom and up all night in pain. After biopsy i went gluten free as a trial and have had no pain in almost a week and no trips to the bathroom ! any insite as to what may be allergic to ot intolarant of ? I go back to the Dr in a few weeks .

[ravenwoodglass]

  blc40 said:

After biopsy i went gluten free as a trial and have had no pain in almost a week and no trips to the bathroom ! any insite as to what may be allergic to ot intolarant of ? I go back to the Dr in a few weeks .

Yea, gluten. The biopsies can tell you conclusively that you do have celiac but they can not tell you for sure and for certain that you don't. The wrong area may have been biopsied, damage can be patchy. There are also changes that are seen before the villi are totally destroyed that some doctors don't recognize and some doctors will not diagnose until the villi are completely destroyed. It seems your body likes you being gluten free and that is really the best test of all. I would continue on the diet and report your good progress and relief of symptoms to your GI when you see him for the follow up.

[sbj]

If it turns out that corn starch is a problem for you - and you really like your gravy - I suggest trying sweet rice flour. I had never used it before going gluten free but it is a great thickener for gravies. Use it the same as flour, so saute a bit in a pan with oil/fat/margarine/butter and then add your broth and heat until thickened. Stuff works better then regular flour for sauces!

[blc40]

  ravenwoodglass said:

Yea, gluten. The biopsies can tell you conclusively that you do have celiac but they can not tell you for sure and for certain that you don't. The wrong area may have been biopsied, damage can be patchy. There are also changes that are seen before the villi are totally destroyed that some doctors don't recognize and some doctors will not diagnose until the villi are completely destroyed. It seems your body likes you being gluten free and that is really the best test of all. I would continue on the diet and report your good progress and relief of symptoms to your GI when you see him for the follow up.

thanks so much , i actually cried when she said the biopsy was negative because i felt so good all week i knew i had to finally have found the answer ! I had so many of the symptoms and it was a long month of pain and anxiety attacks etc. that all went away when i switched. and my bms were regular.

i am going to try to add a few things back in and see how i feel i was also thinking of a soy intolerance ? I will try going back for a few days and see how ifeel if not i am going back gluten free till my follow up.

[ravenwoodglass]

  blc40 said:

thanks so much , i actually cried when she said the biopsy was negative because i felt so good all week i knew i had to finally have found the answer ! I had so many of the symptoms and it was a long month of pain and anxiety attacks etc. that all went away when i switched. and my bms were regular.

i am going to try to add a few things back in and see how i feel i was also thinking of a soy intolerance ? I will try going back for a few days and see how ifeel if not i am going back gluten free till my follow up.

This is just my opinion, I am not a medical professional but I would not add gluten back in at this point. You have seen a definate resolution of your symptoms and I would give yourself a bit longer. In a couple of months if you still have doubt then challenge with something like cream of wheat 3 times a day for a week, or until you react. I think your smart to also suspect that soy might be an issue. The best thing you could do right now is to just avoid it and then when you have healed a bit add it back in to your diet and see if any problems crop up. It can also be a good idea to eliminate or greatly restrict your dairy intake at first, if it seems to give you issues. Soy and dairy are the two most likely things it seems for us to react to if we react to gluten but everyone is different.

To heal fastest go with whole unprocessed foods as much as you can. If you live somewhere with a Wegmans they label all their gluten free stuff and Walmart also does. Your in a great place for support and information. I hope you continue to improve.

[gfb1]

i agree with rwg's advice. however, may have an additional suggestion.

if you suspect that you have more than one food allergy/sensitivity then you (imho) you might try a systematic approach to your diet. start by going one week with a simple allergen-free diet.

only rice/potatoes/banana. there are examples of this all over the place; and if you contact a decent registered dietician (NOT someone with a shingle that says 'nutritionist'...) they can help you with a more interesting menu.

add ONE food back at a time (again, one week per food or is it one food per week??) ... whether corn/soy/eggs/strawberries etc... and see how you feel.

i also agree with the 'processed' food comment (at least until you have more experience). while ingredient/allergen labeling has improved over the last 2 yrs, there are still issues of mislabeling and cross-contamination (my wife's biggest problem food is 'soy sauce', who would have thought that the primary ingredient in most SOY sauces is WHEAT!! and few restaurants can tell the difference....)

[ravenwoodglass]

  gfb1 said:

add ONE food back at a time (again, one week per food or is it one food per week??) ... whether corn/soy/eggs/strawberries etc... and see how you feel.

Good suggestion.

It is one food per week at least 3 times a day in as pure a form as possible. Intolerances can at times need a build up period of 3 days to a week before the reaction is felt.

Another person who can help with an elimination diet is an allergist, which some folks may find is easier to get the insurance company to cover. Do call and ask before the appointment if the doctor can help with the elimination diet as many only work with 'true' allergies.

They can give a person a starting diet of foods that are the least likely that they will be reacting to. They will also design the diet so that it is nutritionally balanced. It is a process to go through and quite timeconsuming but it can definately be beneficial.