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So Confused


blc40

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blc40 Newbie

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 .


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ravenwoodglass Mentor
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 Rookie

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 Newbie
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 Mentor
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 Rookie

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 Mentor
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.


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    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
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