Biopsy results normal - I'm devastated

[PoorlyPixie]

This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. 

Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. 

The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. 

I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. 

I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. 

I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. 

Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. 

Thank you for any help :(. 

[ravenwoodglass]

Do give the diet a good strict try. If you don't trust your family to keep you safe you will have to do most of your own food preparation.  It is tough when you are living with gluten eaters but it can be done. If you haven't already do read the Newbie 101 thread at the top of the Coping section. It has a lot of good info. You may also want to look at threads that have advice on living safely with gluten eaters or ask any questions you may have about it. I do hope you get some relief soon.

[Bree J]

That sounds horrible! You poor thing!

I'm very surprised the test came back negative. However, celiac tests are not 100% accurate and can still come back negative even if you have it! I too had to deal with doctors who either didn't seem to care, or had no idea what they were doing (when it came to celiac) and didn't want me to know that.

I agree with the first reply, make yourself eat gluten free for at least 2 weeks. Even if it's just burgers with no bun, gluten free pasta, etc (if avoiding cross contamination is hard right now), see if cutting out bread and things at least gives you a LITTLE relief. Keep a food journal and before you eat again, write down how you're feeling (full body). My symptoms were never as many as yours but I could tell a difference within one week. No cheating though! It's not likea weightloss diet where one candy bar won't ruin it--- one piece of bread WILL ruin it and make you start all over.

 

Good luck! If you feel you need a true diagnosis, keep getting second opinions. If it's important to you, IT MATTERS!

[Ennis-TX]

I would say give the diet a try, give up cooking with and in the family kitchen...I wish I had, we had so many fights over that back then in a shared house. Get you own little area in another room with a fold out table, a microwave, and a combo ricecooker/crockpot steamer to start with, and some Nordic ware microwave cookware, they have omelette makers, grill plates with splatter covers, steamers, etc. Butcher freezer paper makes great prep area and place mats, crockpot liners same purpose, and if you use the family oven foil line everything and do stuff like foil packets and use your own bake ware.
Keep you food separate and try to use disposable utensils where you can, and a mini fridge in your room. Try whole foods only starting off til you get the diet down avoiding anything processed.

If you need help finding foods or more support or questions feel free to ask.

ONE thing to consider here...your instines have the surface area of a tennis court....they are taking small biopsys, if damage is patchy they could have missed something

OH to help with you other issues, I would suggest a regime of all B-vitamins and magnesium do look up deficiency issues of these and see how they match. I use Liquid Health Energy & Stress, Neurological Support 1 tbsp each 3 times a day and I use Natural Vitality Calm magnesium dosing to tolerance easing into to a few grams at a time. (this one is good for constipation isssues, if you have D use Doctors best as recommended dosing)

 

[at1992]

Dear Poorlypixie,

Your story sounds VERY similar to mine. I had been struggling for about 5 years with similar symptoms that were just getting worse and worse. I got the point where I was close to passing out just from simple tasks... relentless diarrhea (occasional bleeding), horrible GERD, headaches almost every day which progressed to migraines, anxiety and depression symptoms, joint pain in my hands and knees, mouth/gum ulcers and geographic tongue, stomach pain, my hair was falling out in the shower, etc etc. All my lab results had been "normal." A couple of my doctors finally suggested the possibility of me having Non-celiac gluten sensitivity. It's a condition where your immune system reacts inappropriately to gluten (but not in the same way that celiac disease does). I am just as sensitive to gluten as someone with classic celiac (literally a crumb of bread can make me sick). This is a possibility that you might have NCGS. Especially if your dad has celiac - they run together. I'm so sorry you've been feeling so sick! It took me about 2-3 months of being gluten free to finally feel complete relief from symptoms. So be patient if you give it a try! 

[hookedongolf]

I agree that you should try and get on a gluten free diet.  I had similar problems in November and 5 new Doctors have yet to find a reason for strange things happening, pain in my stomach, rashes, nerve problems, etc., through all road seem to lead to sjogenes, an auto-immune.  I finally made it to my GI as my friend had gone through this problem recently and was turning yellow wherein the problem was affecting her liver.  She was told she had celiac and she is fine now after going on gluten free.  I am being tested tomorrow but understand the blood test only tells me if I have the ability to have it, does not prove it.  I don't understand that.  When the bloating and pain in my stomach area after I would eat was so bad, they did put me on a medical probiotic which they did not want me to stay on long, but within a week I was feeling wonderful.  I dropped the probiotic and have stayed on gluten free for about 2 months.  Freeing good but lost about 15 lbs.  I am just trying to pull that back up and from what I have read, that is fairly normal. Good luck to you.  I know you feel they don't care.  I feel once they eliminate cancer, MS, and you not going to die you are pretty much on your own.

[Ennis-TX]

5 hours ago, hookedongolf said:

I agree that you should try and get on a gluten free diet.  I had similar problems in November and 5 new Doctors have yet to find a reason for strange things happening, pain in my stomach, rashes, nerve problems, etc., through all road seem to lead to sjogenes, an auto-immune.  I finally made it to my GI as my friend had gone through this problem recently and was turning yellow wherein the problem was affecting her liver.  She was told she had celiac and she is fine now after going on gluten free.  I am being tested tomorrow but understand the blood test only tells me if I have the ability to have it, does not prove it.  I don't understand that.  When the bloating and pain in my stomach area after I would eat was so bad, they did put me on a medical probiotic which they did not want me to stay on long, but within a week I was feeling wonderful.  I dropped the probiotic and have stayed on gluten free for about 2 months.  Freeing good but lost about 15 lbs.  I am just trying to pull that back up and from what I have read, that is fairly normal. Good luck to you.  I know you feel they don't care.  I feel once they eliminate cancer, MS, and you not going to die you are pretty much on your own.

The standard blood testing tells you if your producing antibodies to fight/attack gluten testing for certain ones. Pretty much helps tell them you have it, the gene test tells them you "Could" have it. They will confirm with a endoscope and biopsy later checking for damage. BUT you have to be eating gluten daily for 8-12weeks for the blood test, or 2 weeks prior to the endoscope read up here.
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[PoorlyPixie]

Thank you all for the replies!  

I'm searching for gluten free alternatives, but I'm struggling as I want to avoid acidic ingredients and possible IBS triggers. All of my symptoms are through the roof right now. I've had pain in my gut for two weeks, and last night I was yelling and crying from the pain of it. Eventually my dad called NHS 111 after midnight, and I had to do an assessment over the phone while I was in the toilet! Would have been embarrassing but I didn't care; glad it wasn't a man on the other end, though! We were told that a doctor would call back within 2 hours, so I waited on the couch with a pillow against my tummy. 4 hours later, still no call, and I was absolutely dog tired, so I told my parents I was going to bed because I desperately needed sleep. Apparently the doctor finally called after 5am, but just told my dad that he wouldn't have been able to come out and help anyway. My dad explained my symptoms and mentioned that his own blood test for celiac was positive, and the doctor told him that because celiac is hereditary, I still could have it. He advised more tests, but I've had everything! Barium, manometry, endoscopy and biopsy. 

We made an appointment to see a doctor today, and she was nice, but she admitted that they're stuck and have nothing more to offer me or advise. She said I just have to wait for an appointment with my gastroenterologist to discuss the next step, and she suggested we give the hospital a call to find out when that might be. She was going to send me for yet another blood test to look for celiac, but then she noticed that I'd had the full screening. Negative. So in the end I was just sent away. She does not believe in NCGS, and said ME/CFS is only diagnosed as exclusion, so she didn't want to label me. I could have screamed, "Please label me! Diagnose me and treat me!"  I'm very depressed at the moment. 

Thank you for the advice, I will continue to search for gluten free food. I think it will take me a long time to find things I can tolerate without just exacerbating my symptoms even more though. Oh yes, my stools last night as I was crying were kind of pale, a lighter brown - I'm sure I've read this is a symptom of celiac, but my villi were fine. 

Is it possible to have celiac disease but not yet have damage? Could it just be too soon for any damage? I've had the symptoms for about 6 and a half years, started eating a lot of bread one year ago. I wonder if my dad has had it for 2 or 3 decades, and I'm not sure if that makes a difference. 

[GFinDC]

Hi poorlypixie,

You can "fail" all the standard celiac testing and still have celiac disease.  The endoscopy can only reach about 5 feet into the body, just the beginning of the small intestine.  So that leaves 20 or so feet still unexplored.  And the blood tests are good but not perfect.  Some people just don't make the grade on antibodies in the bloodstream but still have damage in the gut where the antibodies naturally concentrate.  People with DH (dermatitis herpetiformis) sometimes don't have positive blood tests also.  Probably because the antibodies are attacking the skin instead of floating around the bloodstream.  There just isn't any perfect celiac disease testing available right now.

Your dad should have his vitamins and minerals tested, and so should you.  It is not uncommon for untreated celiac's to be low on vitamins B, D, and others.  Iron may be low also.  That is also a possible indicator that you are having malabsorbtion ( a celiac disease symptom).

If you can't get a positive test you can still go gluten-free for 6 months and see if it improves your health.  You will either start feeling better (not perfect, but better) or there won't be any change.  If there is no change then you may have something else besides celiac disease or in addition to celiac disease.  But at least going gluten-free will get you started on eliminating or confirming celiac disease.  I say 6 months because it can take that long to get better enough to be sure.

Edited June 15, 2018 by GFinDC

[PoorlyPixie]

Thank you. I am low on vitamin D and always have been, I was also low on B12 and was getting jabs at the surgery. The doctor told me yesterday that my B12 went up, but vitamin D is still low. I used to be on iron tablets, until I couldn't swallow them anymore. All of my medications are liquid or dissolvable now. The doctor didn't mention iron at all yesterday. My dad is taking iron, vitamin D, and B12 tablets because he's afraid of doesn't want the jab. 

I was crying in pain again last night but this time from the acid reflux. I'm going to spend today searching online for gluten free foods and planning a new trial diet. Thanks again for the advice, it's really appreciated, feel so frustrated! 

I don't get the rash but I do get inflamed acne, and I wonder if my immune system is attacking my skin and creating angry pimples! 

[Ennis-TX]

3 minutes ago, PoorlyPixie said:

Thank you. I am low on vitamin D and always have been, I was also low on B12 and was getting jabs at the surgery. The doctor told me yesterday that my B12 went up, but vitamin D is still low. I used to be on iron tablets, until I couldn't swallow them anymore. All of my medications are liquid or dissolvable now. The doctor didn't mention iron at all yesterday. My dad is taking iron, vitamin D, and B12 tablets because he's afraid of doesn't want the jab. 

I was crying in pain again last night but this time from the acid reflux. I'm going to spend today searching online for gluten free foods and planning a new trial diet. Thanks again for the advice, it's really appreciated, feel so frustrated! 

I don't get the rash but I do get inflamed acne, and I wonder if my immune system is attacking my skin and creating angry pimples! 

Simplest and best route is whole food meals, look up gluten free crock pot meals, sheet pan meals, stews, soups. I personally prefer omelettes, nut meal porridge and stir fry, and make protein shakes, but I have other limitations. DO read the newbie 101 section. I do updated list quarterly with gluten-free foods but again whole foods should be your goal starting off, and easy to digest ones. I would personally suggest going low carb starting off to reduce bloating and gas, nut meal porridge, soft omelettes (add a bit of almond milk to the eggs), baked/stewed meat go easy on the spices.  Also not checked if mentioned but avoid dairy as your going to have digestion issues with it if you have celiac damage.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/