I BEG FOR YOUR OPINION, CONFUSED WITH TEST RESULTS.

[Gloria L]

Hi everybody, I really need your input. I think these two could have been an early warning but what has happened since March 2020 has me totally clueless, please help me figure this out, I'm posting pictures too. (first time posting, I don't know if I did it right).

Previously, I never had any symptoms at all. Back in the beginning of 2019 I had this pain in my right side of the abdomen right where the gallbladder should be, mine was removed 12 years ago, the GI doctor ordered a HIDA test, endoscopy and colonoscopy and everything was normal. He only tested me for H. Pylori and it was negative. The doctor said it could be scar tissue from the gallbladder operation. The pain lasted two months only and the same way it came, it went away. Also, in December 2019, in my annual physical exam, my ferritin was low. Time passed by, no more symptoms. 

February 2020, I was so stressed by personal events and on top of that, this pandemic started hitting us really bad between February and March, my nerves were on the edge. One Saturday evening in March I was watching TV and I suddenly started feeling like I was set on fire, my whole body felt like I was burning,  I also had body pain and I was shaking at the same time. I truly thought that I had gotten covid. 

My husband took me to the hospital, no fever,  and when I told them my symptoms, they said “it’s just menopause, you need to talk to your gynecologist”. Yes, I was 49 at the moment, I know what hot flashes menopause related are, I’ve been having them for the last 4 years, never bothered me before and this didn’t feel anything like it, it went for days. They gave me a one week sick note for my job, I had to resign, ever since this started I have been really sick and in so much pain, I couldn't go back to work. 

Here is a summary of what happened after, please read it, I'm sorry it's too long:

MARCH: four days after I went to the hospital, I saw the gynecologist, told her about my symptoms and I got the same answer, menopause. She also ordered a routine blood test and urine test. My weight was 139 lbs as per the gynecologist scale.

A week after seeing the gynecologist, I started having digestive problems, indigestion, severe abdominal pain, massive bloating, heartburn, nausea, gas, my stomach would make loud noises, I was crying in pain and couldn’t eat, all these symptoms set in a matter of days. The abdominal pain was horrible, all the gas getting stuck everywhere in my abdomen causing more bloating. My gynecologist called me to tell me that the blood test was normal, urine test showed a minor UTI, I told her about my new symptoms and she said that the UTI was the reason for part of my symptoms plus “menopause”. 

Took antibiotics for a week, and she started me on famotidine too. Nothing worked, I was getting worse and started to lose weight, whatever I eat gave me more pain, unable to cook because of the pain, my husband was giving me canned soup and I couldn’t eat it without pain. I lost my appetite and I started having this fullness feeling since then. I started making bland soups, chicken breast and vegetables, salmon and vegetables, no condiments, no salt, but since it was so hard to eat like that and I would get full after 3 bites I started blending my soup to make it easier for my stomach and that’s how I’ve been eating all this time, puree meals and small portions only.

APRIL: Saw my primary doctor, he ran more routine blood tests and everything looked fine, now I was having painful and burning GERD and he prescribed omeprazole, he said take the omeprazole in the morning and the famotidine at bedtime, he also referred me to a GI doctor, the same one I saw in 2019. Also, for the first time I had a painful period, (I still menstruate, I know, shocking!), ever since I got sick my periods have been very painful, I’m scared of having them now and all my symptoms get worse too when I have my period, I even eat less those days, my only explanation to this is inflammation caused by the natural process of menstruation on top of more inflammation??

I also experienced anxiety for the first time, had 2 episodes in April, after constant pain, who is not gonna get anxious, that was my thought.

MAY: First endoscopy, it showed mild gastritis, GERD and hiatal hernia, the GI doctor tested me only for H. pyloris nothing else, negative for H. pyloris. GI doctor said to continue with the omeprazole and famotidine. 

JUNE: same GI doctor ordered a blood test, including a celiac disease panel (June 4, 2020), it was negative for celiac, see the picture for the result. This doctor didn’t do any further testing.

Convinced that it was menopause and possibly the hiatal hernia was causing all this, I went to a chiropractor for an adjustment of the hiatal hernia and it worked, I know it did because of further testing. 

JULY: Saw an integrative doctor, he ordered more blood tests, everything looked normal. He recommended a fundoplication operation for the GERD. Thank God I didn’t listen to him.

AUGUST: Since I wasn’t getting any better, I saw a different GI doctor for a second opinion, he repeated an endoscopy, blood test and ordered an XR/UGI series with esophagram.  

The endoscopy showed mild gastritis and GERD, no hiatal hernia. 

The biopsy report details biopsies from specimen A through specimen F, so I’m assuming only 6 samples were taken??

Biopsy was all normal and they even ruled out celiac disease, it says “Duodenal bulb appeared normal, biopsy done to rule out celiac disease”, the doctor confirmed no celiac disease.

The UGI series showed only GERD and no hiatal hernia, and the blood test result from August 1, 2020, IgA/IgG was negative, please see the picture.

This doctor also told me to continue taking omeprazole and famotidine and sent me home. Since I noticed that the acid blockers were making me more sick, I decided to stop them cold turkey, big mistake.

At this point I thought what if I have an undiagnosed autoimmune disease?, so I decided to see a rheumatologist, he tested me for the most common autoimmune diseases that might interfere with digestion and nothing, he didn’t test me for celiac disease.

SEPTEMBER: saw a functional doctor, she ordered a functional stool test and SIBO test, the stool test showed a mild dysbiosis, negative for candida and SIBO test was also negative. She prescribed probiotics, a protein powder and magnesium bisglycinate. I must say that the magnesium is helping me, I started getting constipated in May. She didn’t order any blood testing or treated the GERD and the gastritis which I found strange.

OCTOBER: I started feeling pain under my ribs and I started also feeling like warm and non stop sweating and I kept taking my temperature but no fever, this only got worse with time, i also notice that I have become sensitive to heat, at the same time my legs, the front by the shin area, started to feel like burning.

NOVEMBER: I was getting worse, losing more weight, and I started having heart palpitations, the functional doctor referred me to a third GI doctor that worked with her, the GI doctor only ordered a XR-Upper GI w/small bowel, everything was normal within limits.

Frustrated, I stopped seeing the functional doctor and I decided to see a naturopath doctor, so far and according to all testing, only mild gastritis and GERD were my only problems. 

The naturopath doctor started me with zinc carnosine for gastritis, L-glutamine for leaky gut, tripled the potency of the probiotics and also gave me digestive enzymes. She said that in December she would start treating the GERD, first she needed to heal the gastritis. 

DECEMBER: My naturopath doctor decided to start the treatment for GERD, she prescribed betaine HCl+pepsin, she also ordered a functional food allergy test with a candida blood test (IgG food map test). And gave me a list for more blood testing, she suspected something else was going on, I had to go back to the integrative medicine doctor I saw in July and I asked him to run these tests, but now he decided to run more additional tests and a CT scan of abdomen and pelvis. Also in December I decided to start biodentical hormone therapy believing that the non stop sweat and feeling warm were caused by menopause. Since I still have my periods, as per the doctor, I can only take oral progesterone, so far the hot flashes have improved only a little but now I know why, keep reading please.

DECEMBER 30: appointment with the doctor to go over the test results, all he said was, you have celiac!!!, that’s what it is!!! Just keep away from gluten and you’ll be fine in 2 weeks, I’ll see you in a month!!!. Me: Wait what? He continued saying “I will email you more information about the disease”, and that was it, he sent me home. Please see all the pictures from December 18 to see the test results, that was the day they drew my blood.. So new years for me was a sad day, my husband cooked for him and the kids, I went to bed at 9 pm I was crying and in a lot of pain because of the 2 bottles of readi cat 2 barium they gave me for the Ct scan, I had the scan on tuesday December 29, I started going to the bathroom 3 -4 times a day since then (no D, only soft) I usually go 1 to 2 times/day. On Saturday January second, I had a horrible pain right where my small intestine is, I thought I needed to go to the bathroom, right when I sat down the pain got worse, I couldn’t even breath and I started sweating like crazy, I called my husband, he took me to the hospital I told the doctor what happened, he came to the conclusion that the barium hurt my intestines. The barium was the only thing different from my diet, the more frequent trips to the bathroom started right after and also the pain in that area started on the same day and got worse with each day until that saturday.

The following week, I told my naturopath doctor what happened, I emailed her the test result, and told her what the doctor said. She mentioned that in the thyroid panel the RT3 (this is the one she wanted me to tell the doctor to order) was high almost out of range, my cortisol is also high, out of range, checking previous blood tests, my cortisol has been high since July, the first time it was checked. So, the naturopath doctor is giving me supplements to balance the levels in my thyroid, I’m taking L-carnitine for that, she also wants me to do a micronutrient test. She ordered the kit already, we are just waiting for it. Since the first week of December I’ve been trying to avoid cross contamination in my kitchen, I even got a small microwave for my use only, Unknowingly, the almond butter I was using for my shake was Whole Foods 365, it doesn’t say gluten free, they told me “if it doesn’t say gluten free on the label, we can’t guarantee the product is gluten free”.

Since January 7th I can say that my gluten free journey started. Meantime, I have to force myself to eat,  I'm eating like I said, a small bowl of chicken/salmon soup with a piece of sweet potato, cauliflower, broccoli and spinach (puree) and a gluten free protein shake twice a day, a small cup made with a tsp. Of almond butter and 1 banana (in the morning) and another shake with a piece of avocado in the afternoon. In the beginning, I wasn’t eating anything at all, like I said, I have to force myself to eat but I can only eat small portions and I can’t drink much water either,  I’m so dehydrated, my skin is super dry. From 139 lbs, I went down to 107 lbs only, I’m skin and bones,, I feel weak and tired all the time and I’m still in pain, I get bloated and gassy, I lost my appetite, I feel full all the time, my stomach growls a lot, sometimes my head feels weird, and I still feel like warm and sweating. Please help me understand what happened here, why negative for celiac in previous blood tests and negative biopsy too? And just recently, the blood test says positive, was it too early to test me for celiac although I was having digestive problems already? And what about the endoscopy? Was it too early and that’s why no damage in the intestine was found? Or the piece that was examined didn’t have any damage? And for the digestive symptoms, can they go from bad to worse in two-three weeks from the first time they show? Please, I desperately need your opinions, I don't know much about this disease and never heard of relatives having celiac either, thank you in advance.

[ravenwoodglass]

I am so sorry that you have had to go through so much. The good news is that you can heal but it may take some time. Do go to the Coping section and read the top post as it will have a lot of information that can help you heal and stay safe.

The first tests they did were the older tests that have a higher false negative rate than the last tests you had done. I was also a false negative on the tTg tests which delayed my diagnosis for many pain filled years so i am happy they did the newer tests for you which picked it up.

Many doctors will just say 'just go gluten free' without telling us all the precautions we have to take. Even the tiniest bit of gluten can cause your antibodies to flare or keep them active if you are still healing. Even a kiss from a gluten eater can get us so do be sure hubby brushes his teeth first.

We are here to help you get through the adjustment to the gluten free lifestyle so feel free to ask any questions that you may have. Do let your first degree relatives know that they should be tested and it would be a really good idea to make sure your children are tested regularly even if they don't have GI symptoms. Celiac in children can impact mood and have a negative impact on peoples brains before the GI symptoms become a problem. i hope you are feeling better soon.

[ravenwoodglass]

One last thing if you live in an area with a Wegmans market they mark all their gluten free items with a circle G which makes shopping easier. 

[Scott Adams]

This article may be helpful, but be sure not to go gluten-free until you find out whether or not your doctor wants you to do a biopsy to confirm the diagnosis: