Do you think I have Celiac? I would appreciate anyone's input

[Golfguy21]

* I apologize for the lengthy post but would appreciate any input from anyone willing to read my story.

I am 26 years old and I never had any prior health issues prior to last March. I would eat whatever food I wanted and never had any issues prior to this. My health issues started on March 13th,2020. I ate pizza at a food court around lunch time and 6-8 hours later I had a massive stomachache where I was nauseous and had diarrhea. It lasted a few hours and then it ended so I thought I had food poisoning or something like that. The night before that I ate some frozen lasagna that was about 3 months old, but I am not sure if that would have been the culprit. My stomachache seemed very sensitive that day and I was recommended to go on the brat diet by my doctor for a few weeks to see if that would help. However, the diarrhea persisted for a couple days and eventually stopped but I did not have an appetite anymore. There was a day where I started to get sharp stabbing chest pain and I thought I was having a heart attack. I went to see my doctor and she ran an EKG and chest x ray and thought everything was okay. I never had that chest pain before, so it really concerned me. I have had it two other times over the past year and still have not had many answers which is frustrating. I was experiencing belly pain, nausea, lack of appetite, diarrhea for my stools and then it changed to pale looking stooks with mucus. I still have mucus in my stools from time to time.

I weighed 225 at the time and kept losing weight but I was not eating because I was very nauseous. There was one night where I ate a chocolate chip muffin and that made me very nauseous. I went to a GI specialist and he ran a blood test and stool tests, and everything was normal except my total bilirubin (1.9) and ALT (52) were slightly elevated. He recommended an upper endoscopy and ultrasound of my abdomen. They found a little redness in the endoscopy, but no issues and the biopsies were negative for celiac disease. He thought maybe I had reflux, so I went on a PPI and that only made things worse due to the side effects which made me dry heave. He did more tests to look for clues to my symptoms and he did CT scan of my abdomen and pelvis, colonoscopy, h pylori stool test, colonoscopy, small bowl follow through x ray and gastric emptying study. Most of those tests were normal. My colonoscopy showed redness in the distal sigmoid colon and the biopsy showed Benign colonic mucosa with mild edema and focus with histologic features suggestive of chronic ischemic changes. My GI doctor did not think the biopsy meant anything though. All these tests took about 3-4 months to do and I was told that in his opinion nothing was that wrong with me and he thought I might have post infectious ibs and it might take time to get through it.

My weight continued to drop to around 200 even though I was eating as much as I could. I used to eat just lunch and dinner and would gain weight, but I guess I was eating greasier foods and that is why I gained weight on those in the past. I went to get a second opinion because I knew something was wrong. I am the type of person who won't go to the doctor unless something is really bugging me. He recommends all these tests such as fecal fat and other blood tests such as celiac and ANA autoimmune antibodies. I said I got an endoscopy and was told I do not have celiac because the biopsies were normal. He wanted to run the blood test just to be safe and I was fine with that because I was searching for answers and this was 6 months of me not feeling well at this point. It turned out a few of the antibodies were positive and he recommended a gluten free diet and a repeat endoscopy.

Blood Tests 9/18/20

DGP IgG (21.1 CU) REF RANGE <20 CU

DGP IgA (<5.2 CU) REF Range <20 CU

TTG IgA (27.0 CU) REF RANGE <20 CU

EMA IgA (Positive) REF RANGE Negative

Total IgA (268 mg/dl) Ref Range 44-441 mg/dl

Genetics- DQ8

I started the gluten free diet and was scheduled for the upper endoscopy in two weeks. My GI doctor said he would get the endoscopy scheduled as soon as possible and me being off gluten for 2-3 weeks would not matter. He said if you have not been off gluten for months or years it won't make a difference. I got the next upper endoscopy and they found a sliding small size hiatal hernia was seen, displacing the Z line to 38 cm from the incisors with hiatal narrowing at 42cm from the incisors. I am not sure if that was missed in the first endoscopy of what. The report also said there was evidence of irritation and erosion in your stomach and small intestine and small hiatal hernia. Stomach biopsy showed erosion in the background of mild reactive gastropathy with no evidence of H Pylori. Duodenal biopsy showed no significant pathologic changes. My doctor said the biopsies were normal so either they missed it with the biopsies which they took 10-15 biopsies or maybe I will develop it in the future and I don't have it yet but he was not sure. I continued the gluten free diet and I was left confused. I have been gluten free since (10/01/2020) which has been about 7 months 

I recently got a breath test for SIBO, sucrose and fructose intolerance. The sucrose was native for hydrogen and methane. The SIBO was positive for hydrogen but not methane and the fructose were positive for hydrogen and methane. My doctor wants me to take Xiflaxin for 14 days to see if that will help. My current symptoms are belly pain, no appetite, nauseous feeling in throat, belching more than normal, feeling out of breath more often, pale mucus stools, fatigue, and tingling feeling in bladder urethra area but told not UTI. My doctor recently did two more blood tests on to check on the celiac antibodies.

3/9/2021

TTG IgA (1 unit) REF RANGE <4 is negative

4/15/2021

DGP IgG (4 units) REF RANGE <19 negative, 20-30 weak positive,>31 positive

DGP IgA (135 units) REF Range <19 negative, 20-30 weak positive,>31 positive

TTG IgA (4 Units) REF RANGE <19 negative, 4-10 weak positive,>11 positive

EMA IgA (Negative) REF RANGE Negative

Total Bilirubin (1.9) REF RANGE 0.2-1.2

ALT (52) REF RANGE 9-41

AST (22) REF RANGE 9-46

IgG (1671) REF RANGE 700-1600

IgA (253) REF RANGE 70-400

IgM (70) REF RANGE 40-230

One frustrating thing has been when I went gluten free, I bought some gluten free breads and snacks like cookies, but they gave me bad stomachaches. I tried multiple brands, but anything processed and made gluten free gives me diarrhea and stomachaches. My GI was shocked before I started my gluten free diet, I would eat pizza and sandwiches with no stomachaches but when I ate gluten free bread and baked goods with flour, I would get bad stomachaches. This has been a frustrating year before for because everything was fine for me one day and my entire health has diminished the next. I am still suffering and hope one day I can feel closer to my old self.

Does anyone have any thoughts to my story? Do you think I have celiac and does it sound like there is other things going on as well?

 

[trents]

Welcome to the forum, Golfguy21!

"TTG IgA (27.0 CU) REF RANGE <20 CU" This particular IgA test is the least sensitive but the most specific for celiac disease and it returned a definite positive value. When it does comeback positive it is a strong indicator of celiac disease.

"My GI doctor said he would get the endoscopy scheduled as soon as possible and me being off gluten for 2-3 weeks would not matter. He said if you have not been off gluten for months or years it won't make a difference." This is absolutely wrong information and I would be shocked the GI doc told you this except for the fact that this forum community is well aware of the ignorance of the medical community as a whole with regard to celiac disease and gluten sensitivity. Even many GI docs are woefully underinformed about celiac disease/gluten sensitivity. 

"If you are currently on a gluten-free diet, your physician may recommend a gluten challenge to allow antibodies to build in your bloodstream prior to testing. NASPGHAN recommends eating roughly 2 servings of gluten, equivalent to 2 slices of wheat-based bread, daily for 6-8 weeks prior to testing. The Celiac Disease Center at the University of Chicago recommends eating gluten every day, in an amount equivalent to at least 1 slice of bread, for at least 2 to 3 weeks prior to undergoing biopsy." https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is no wonder that your blood antibody tests the second time around were lower. You had already adopted a gluten free diet.

As you probably know, several of your symptoms are classic for celiac disease/gluten sensitivity. But you could also have other things going on. And, about 20% of people with celiac disease will have elevated liver enzymes. I note your bilirubin and ALT were elevated. In my own case, this is what actually led to my celiac diagnosis but these elevated liver enzymes normalized within a few months of beginning to eat gluten free.

Most people starting out on a gluten free diet have a poor understanding of where and how gluten is hidden in the foods produced by the the processed food industry. We are finding out that many processed foods labeled "gluten free" really aren't because of cross contamination. In other words, gluten was not an intentional ingredient in the formulation but ingredients used in the product may have come in contact with gluten containing grains during the growing, harvesting, storage and transportation of the non gluten grains or in the production of the end product by coming in contact with equipment that was used to grind, mix and package the end product. If you are using "gluten free" processed food items we recommend getting those with the CGF (Certified Gluten Free) label since these are subject to more strict and consistent testing standards. You must also learn how gluten is hidden by terminology in the food industry. For instance, wheat goes by an number of different names. And wheat/barely is present in foods with "malt flavoring." This latter one is often found in corn and rice based breakfast cereals. Getting to the point where you are truly eating gluten free instead of just eating low gluten is a challenge and there is a significant learning curve involved. Even spices, meds and supplements can contain gluten. Most soy sauces contain gluten and most can soups. Some chocolate syrups contain gluten. You must become a label reader and a food detective in order to avoid gluten.

Also, it is very common for people with celiac disease or gluten sensitivity to react to cow's milk protein ("CMP") and oat protein the same way they do gluten. So, I would recommend cutting out dairy and oats for a time along with gluten and then adding those two things back in one at a time so as to determine which one if either is causing a problem.

Actually, I would recommend you eliminate as many processed foods from your diet as possible. Focus on things simple things you prepare yourself like fresh meat, fresh vegetables and fresh fruit.

 

[trents]

I also wanted to say that it is possible you have gluten sensitivity rather than celiac disease. The positive blood work but negative biopsy while you were still on gluten may suggest this. At the current time, there is not a non invasive way of distinguishing the two and there is a great deal of overlap between the two symptomatically speaking. The two share many of the same long term health risks as well. The difference is that gluten sensitivity does not damage the small bowel lining as does celiac disease. But the antidote is the same. Total avoidance of gluten.

Edited May 10, 2021 by trents

[Golfguy21]

1 hour ago, trents said:

I also wanted to say that it is possible you have gluten sensitivity rather than celiac disease. The positive blood work but negative biopsy while you were still on gluten may suggest this. At the current time, there is not a non invasive way of distinguishing the two and there is a great deal of overlap between the two symptomatically speaking. The two share many of the same long term health risks as well. The difference is that gluten sensitivity does not damage the small bowel lining as does celiac disease. But the antidote is the same. Total avoidance of gluten.

Thank you for the response. I appreciate it. I have been on the gluten free diet for 7 months and have solely been on foods with the certified gluten free label. I have a couple of follow up questions.

1. Can you have gluten sensitivity even with positive blood work?

 

     2. My liver tests still have not normalized even though I have been gluten free for 7 months.           Do you think this is connected to celiac or something else?

 

     3. Do you think I should have felt better after being  gluten free for 7 months?

 

     4. I feel like every time I would eat gluten free foods such as breads, cookies, pretzels they would give me worse stomachaches than when  I was eating gluten Is this odd? It has made life harder for me because there are all these gluten free alternatives but I have been staying away from them. My doctor was surprised when I told him before I started  being gluten free I would eat regular bread and pizza and was no worse but when I ate gluten free bread and gluten free bread I had massive stomachaches.

 

5. On my original positive blood work the DGP IgA was negative when I was on a gluten containing diet but it is positive in my most recent blood work when I was gluten free for 7 months. Is this odd?

[trents]

DGP is usually run when total IGA is low. Low IGA can give invalid results for Ttg IGA and other IGA based tests. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Gluten free/gluten free certified processed foods typically utilize many texturing substitutes that our digestive systems are not used to and may not handle well. You may be intolerant of one or more ingredients typically found in gluten free processed foods. Are you still using dairy and oats? Lately, I have developed an intolerance to eggs that causes me a gut ache if I eat more than one egg in a meal or when eating processed foods that make heavy use of eggs such as paleo pancake mixes. People with celiac disease/gluten sensitivity have immune systems that are dysfunctional and it is common to develop intolerances/allergies to non gluten foods over time. It can be almost anything but dairy and soy are common among them and oats. 

I don't have an answer to your continued elevated liver enzymes if you are truly eating gluten free. Like I said above, you may have some other things going on. 

Edited May 10, 2021 by trents

[CMCM]

"4. I feel like every time I would eat gluten free foods such as breads, cookies, pretzels they would give me worse stomachaches than when  I was eating gluten Is this odd? It has made life harder for me because there are all these gluten free alternatives but I have been staying away from them. My doctor was surprised when I told him before I started  being gluten free I would eat regular bread and pizza and was no worse but when I ate gluten free bread and gluten free bread I had massive stomachaches."

 

I learned I simply cannot eat the various gluten free foods you mention...and like you, they gave me WORSE stomach aches than the actual gluten foods they imitated.  However, gluten was messing me up in ways other than strictly digestive upsets.  What I believe bothered me in the gluten-free foods was the heavy use of various starches and alternative flours...potato starch, tapioca starch, etc., to say nothing of the huge amount of sugar used in them all.  The gluten-free goodies really wreaked havoc in my digestive system big time.  

When I had my gluten tipping point crisis in late December, I had to cut out almost EVERYTHING to get better, and I do mean everything.  For awhile, I was eating just a few things that I knew didn't bother me.  I also suspect I am sugar/fructose intolerant, and of course, can't handle any starches or corn, although I seem to do ok with moderate rice  (in the beginning I ate a lot of cream of rice and bananas).  Now 4+ months on I'm doing much better and I haven't had the stomaches or pain at all.  But I'm very careful, and I stay away from all the things I know might bother me and I never buy gluten-free bread/cookies/cakes etc.  I eat mostly a pretty paleo, low carb type diet and feel great that way.

Edited May 10, 2021 by CMCM

[Scott Adams]

Welcome to the forum! 

It looks like you initially had 2 positive blood tests for celiac disease, as you show:

DGP IgG (21.1 CU) REF RANGE <20 CU

Also, many gluten-free products use gums like xanthan gum, which can cause issues with some people:

 

[Scott Adams]

Gluten-free foods can also be high in starches and sugars, so try to find healthier versions of gluten-free products.

[Golfguy21]

6 hours ago, Scott Adams said:

Welcome to the forum! 

It looks like you initially had 2 positive blood tests for celiac disease, as you show:

DGP IgG (21.1 CU) REF RANGE <20 CU

Also, many gluten-free products use gums like xanthan gum, which can cause issues with some people:

 

Thank you for the response Scott. It seems like the gluten free foods that gave me bad stomachaches had either xanthan gum or sorghum flour in them. 

1. Do you think based on all the blood work I listed above I have celiac even though all my biospies for my two endoscopies were normal?

2.  2. My liver tests still have not normalized even though I have been gluten free for 7 months.  Do you think this is connected to celiac or something else?

3. Do you think I should have felt better after being  gluten free for 7 months?

4. Have you heard of people being sensitive to sorghum flour?

5. I have been reading about gliadin x as a possibilty to use in the future as a way to avoid cross contamination in restaurants as I have been mainly cooking myself the last 7 months to avoid the cross contamination. Would you recommend gliadin x and is there any FDA evidence it works?

 

 

[Scott Adams]

1. Yes, you have two positive blood tests for celiac disease, and you don't want to end up with villi damage, which likely would happen if you continued eating gluten daily for years. Your autoimmune system is clearly triggered by gluten, which your tests show. Normally only 3-4 samples are taken during an endoscopy, and I've heard that if all your villi were stretched out flat it would cover a football field. So only taking 3-4 tiny samples could obviously still miss areas that might be affected, or more likely, you've caught this early and haven't reached that stage yet.

2. I will assume your diet has been 100% gluten-free, as even small amounts of gluten on a regular basis could prolong your recovery. I can't say for sure that your liver issues are related to celiac disease, but can say that celiac disease is directly linked to liver issues, and this in this category we've summaries many studies on this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/

and IF your liver issues are related, they will likely normalize over time, but it could take a couple of years:

 

3. It depends, believe it or not many celiacs have few noticeable symptoms, but normally the symptoms associated with celiac disease do go away in the months following a gluten-free diet, especially if there is no visible villi damage. This article may be helpful:

 

4. Yes, and in fact ~25 years ago the national celiac organizations could not agree whether or not sorghum and quinoa were gluten-free. Some had them on their unsafe lists due to the "gut reactions" that many members had to them. I will assume you're eating a type marked "gluten-free," as any grain could be cross-contaminated during milling, transportation, storage, etc., but you should probably eliminate it, at least for a few months, to see if it helps.

5. I use GliadinX whenever I eat outside my house, and they are a sponsor here, but even if they were not a sponsor I would still recommend them, and any other gluten-free brand that contains AN-PEP, which has been studied more extensively than most supplements, which are not FDA approved. You can read the many scientific studies on their site: https://www.gliadinx.com/publications. AN-PEP enzymes have been used for decades as a clarifying agent in the brewing industry, and are widely available now as a supplement, so there probably would never be a company willing to put up the ~$40M and 10-20 years it would take for the product to be FDA approved as a prescription medication.

 

[Posterboy]

On 5/10/2021 at 7:52 PM, Golfguy21 said:

It seems like the gluten free foods that gave me bad stomachaches had either xanthan gum or sorghum flour in them.

 

On 5/10/2021 at 7:52 PM, Golfguy21 said:

Have you heard of people being sensitive to sorghum flour?

Golfguy21,

Check out this thread.  Somebody else recently thought they might have had problem(s) with Xantham Gum and potentially a gluten free Sorghum Cookie mix....

I explained in detail how Sorghum flour can be  a problem for Celiac's.

I hope this is helpful but it is not medical advice.

Posterboy,