I'm so frustrated

[Lissa283]

This is long, but I really feel at my witts end about all my medical problems. 

4 years ago - I had a Positive TTG-IGG (12.5), negative biopsy, terrible bowel issues, was told I had chronic gastritis and told to take Pepcid.  I had gone gluten free and mostly allergen free for a while and felt the best I had.

Then I started getting symptoms again like 2-3 years ago, which worsened the last year. 

2 years ago- I went to another GI doctor who told me I couldn't have celiac disease because I don't have the gene (HLA). 

Currently- I have the worst bowel problems ever and have had terrible reflux, lump in my throat feeling and terrible smelling diarrhea, bloating, and right side abdominal pain for a year, severe respiratory problems/asthma/allergic reactions, fatigue.  An allergist told me I'm allergic to a TON of foods....milk, egg, nuts, soy, etc, etc.  My TTG-IGG is STILL POSITIVE but worse (68).  My primary swears I have celiac disease and that I need to stay away from gluten. 

Last 3 days - I have had pitting edema of my arms/legs.  My husband swears I have an inflammatory problem. 

Could this be celiac disease? My current GI says he wants to call a leading celiac disease researcher in San Diego, Dr. Sheila Crowe and ask her about my case. 

Can my TTG-IGG be caused by sensitivity?

 

HELP! PLEASE!

 

 

[cyclinglady]

So, you did well on the gluten-free diet, went off the diet and now your symptoms are back?  

Go see or have your doctor contact Dr. Crowe.   I once had a nice discussion with her in an elevator heading to a celiac conference.  She is good!  

Was Inflammatory Bowel Disease ruled out? My niece was finally diagnosed with Crohn’s with a pill camera.  Her damage was out of reach of both scopes.  The Autoimmune Paleo Diet has been touted as being effective in healing IBD patients and they (Scripps in San Diego) are going to test it for Hashimoto’s.  The AIP diet is gluten free which might explain your feeling better on a gluten-free diet....just a thought.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

 Other things can cause elevated TTG IgG:

http://www.jessicamaddenmd.com/JESS-Blog/May-2017/The-Alphabet-Soup-of-Celiac-Blood-Testing

(Jebby/Jessica is an old member who blogs about celiac disease.  She is a preemie doctor.)

Besides celiac disease and Hashimoto’s, I have chronic autoimmune gastritis (biopsied).  My symptoms for that usually affect just my stomach and or cause fatigue.  But everyone probably has different symptoms.  I assume your stomach was biopsied and that H.Pylori was not the cause of your Chronic Gastritis?   Or did they just look and see inflammation?  

If you have read my past postings, you might know that my hubby went gluten-free some 12 years prior to my celiac disease diagnosis.  Does he have celiac disease?  We do not know and he refuses to do a challenge because we know that gluten makes him sick.  He was hospitalized and had no issues with remaining gluten-free while in their care.  I, on the other hand, had to bring in my own food, since I was not able to eat safely in the cafeteria.  

Diagnosis or not, it seems that gluten is not for you just as it is not good for my hubby.  

[Ennis-TX]

There are many genes for celiac, some less known the others, some rare. Frankly I have a one they called some Rnumber that I learned about a few weeks ago, still not much info from doc other then some link to snippet info. https://snpedia.com/index.php/rs6822844

I started to see improvement for a few years but still had random gut issues, gas, bloating, cut back sugar, carbs, and fruit and felt better. Found out few years ago I also had Ulcerative Colitis and it was flaring to glucose fructose, went practically keto/atkins and the gut issues improved greatly. The lower carb diet can also address SIBO and Candida which is something celiacs are prone to. If your eating tons of gluten free processed foods, sugar, and starches with the damage gut they can set in and wreck gastro nightmares of gas, bloating, cramping.

Other food intolerance issues are also a problem for celiac....heck see my list. Keep a food diary and do a elimination diet. Only eat a few  safe foods remove everything else. DO NOTE that many food issues with new intolerance, sensitivities, and allergies will come up after gluten exposures.....most of mine did.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary

[ravenwoodglass]

I am someone with an oddball gene. In my case DQ9. Gene testing can not firmly rule celiac in or out at this point in time. Keep in mind celiac is autoimmune not just a GI disorder. Your primary can give you a formal diagnosis based on your antibody levels going down and symptom remission on the diet.

Some of those other allergies could resolve in time. My allergist tested me for 99 substances and the only thing I didn't react to was beech trees. After I healed I only ended up with a couple mild true allergies. He said that my immune system was in 'hyperdrive' due to the celiac. After you have healed for a while you can try adding back in items one at a time in purest form possible for a week and watch for a reaction.

[Posterboy]

22 hours ago, Lissa283 said:

was told I had chronic gastritis and told to take Pepcid

Lissa,

Here is some research that might help you.

This first article discusses the pros and cons of taking acid blockers. .. . the 2nd is hard research explaining why the conventional idea of blocking stomach acid doesn't work long term.

https://consumer.healthday.com/infectious-disease-information-21/antibiotics-news-30/study-reducing-stomach-acid-won-t-help-gastritis-505613.html

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

I have included both so you can see both sides of the argument. . .then decide for yourself if taking the acid reducer is helping or hurting at this point.  . .. but stepping back/down two to three weeks between step down in doses is the easiest way to get off of them for good.

I found that treating my low stomach controlled most of my GI inflammation as the articles mentions happens from bacterial overgrowth . . .most common'ly associated with the small intestine (SIBO) but if this research is right it is also happening in the stomach leading to heartburn, aka GERD etc.

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

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Awol cast iron stomach]

Gluten causes edema for me. So if you get cc or went back on gluten I can completely understand the body holding water. Edema was one of the symptoms I used during my food intolerance/food sensitivity diary stage as Ennis suggested you can do too. After gluten was affirmed they told me I had more to suss out what other foods were causing issues.

As cycling lady said we often on scopes show inflammation along the whole tract. My esophagus, stomach, intestines had issue on scope. They ruled out my former diagnosis as not being accurate and ruled out h pylori etc. It took 40 years too long , but I am a DH celiac with intestinal inflammation on scope however not gold standard Marsh like my cousin.

Gluten can be destructive to those of us who can't have it, often our symptoms have been a lifetime including lots of shapeshifting multi symptoms, misdiagnosis, it can be a frustratingly long journey. I very much hope that changes. When I joined here I realized these were my peeps and it all came together. 

Good luck on your journey

[Lissa283]

Thanks for all your input.  I actually started eating gluten again because they said I didn't have the genetic marker and that I couldn't have celiac disease (which was after being gluten free for a year).  I started getting GI symptoms again about 8 months after I went gluten free and still have them now. 

Has anyone been diagnosed celiac without having the DQ2 or 8?  My husband (who is a molecular geneticist thinks its crazy to say anything is 100% and found research to support that there have been a very small number of patients with damage and no genetic mutation, but in other countries). 

Current symptoms:

hives/rashes, fatigue, body swelling/pitting edema, diarrhea/urgency/foul smelling, lump in the throat and GERD really bad after certain meals, right side abdominal pain for months, and hypertension (and I'm 36 yrs old and petite).

I also acquired 20 food allergies in the last 4 years....and from what I've read can be caused by generalized inflammation (i.e. caused by gluten)

 

Current labs:

TTG-igg=68 (5 times higher than 4.5 years ago)....normal is <6

 

[Ennis-TX]

22 minutes ago, Lissa283 said:

Thanks for all your input.  I actually started eating gluten again because they said I didn't have the genetic marker and that I couldn't have celiac disease (which was after being gluten free for a year).  I started getting GI symptoms again about 8 months after I went gluten free and still have them now. 

Has anyone been diagnosed celiac without having the DQ2 or 8?  My husband (who is a molecular geneticist thinks its crazy to say anything is 100% and found research to support that there have been a very small number of patients with damage and no genetic mutation, but in other countries). 

Current symptoms:

hives/rashes, fatigue, body swelling/pitting edema, diarrhea/urgency/foul smelling, lump in the throat and GERD really bad after certain meals, right side abdominal pain for months, and hypertension (and I'm 36 yrs old and petite).

I also acquired 20 food allergies in the last 4 years....and from what I've read can be caused by generalized inflammation (i.e. caused by gluten)

 

Current labs:

TTG-igg=68 (5 times higher than 4.5 years ago)....normal is <6

 

Yep, I got a odd one, I tested negative for the standard gene but have this snippet  https://www.snpedia.com/index.php/Rs6822844
Which in my humble opinion is a much worse one I have Ulcerative Colitis on top of it so I had to find my UC triggers also which happened to be carbs, soy, some hot spices, and sugars, and another wammy later when I found I had blood sugar issues.
We have another member who had another odd ball gene linked to Celiac.

Of course you could also be NCGS in which cases can have worse symptoms or be more sensitive then some celiacs to gluten.

[Wheatwacked]

4 hours ago, Ennis_TX said:

I couldn't have celiac disease

There are 200 or more symptoms that improve with a gluten free diet. What never seems to be mentioned is malabsorption syndrome, which is comorbid with celiac. For example, a friend and I have been taking 10,000 iu. of D3 for a few years now. His blood level is 70 nm/ml and mine is 44. According to a pamphlet from the UK, in order to maintain the optimum level of D of 70, an average person needs 8,500 iu. a day. Obviously, I am absorbing only half as much as he. I am 4 years gluten free and since then have had incredible reversal of some 19 symptoms including sleep apnea, swollen prostate and alcohol addiction. Over the past year I one at a time increased my essential vitamin and minerals intake to 75% of the recommended upper limit and found most had a significant effect on my well being. 

My insurance company denied payment for the vitamin D test (deemed it unnecessary) and my  internal medicine doctor told me to find a different physician.

My  point is that for whatever reason your digestive system is compromised and you are nutrient deficient and that deficiency itself can be the cause of some if not the majority of your symptoms. Most doctors believe that vitamins are quackery, I did too until I proved myself wrong. 

[ravenwoodglass]

13 hours ago, Lissa283 said:

Thanks for all your input.  I actually started eating gluten again because they said I didn't have the genetic marker and that I couldn't have celiac disease (which was after being gluten free for a year).  I started getting GI symptoms again about 8 months after I went gluten free and still have them now. 

Has anyone been diagnosed celiac without having the DQ2 or 8?  My husband (who is a molecular geneticist thinks its crazy to say anything is 100% and found research to support that there have been a very small number of patients with damage and no genetic mutation, but in other countries). 

Current symptoms:

hives/rashes, fatigue, body swelling/pitting edema, diarrhea/urgency/foul smelling, lump in the throat and GERD really bad after certain meals, right side abdominal pain for months, and hypertension (and I'm 36 yrs old and petite).

I also acquired 20 food allergies in the last 4 years....and from what I've read can be caused by generalized inflammation (i.e. caused by gluten)

 

Current labs:

TTG-igg=68 (5 times higher than 4.5 years ago)....normal is <6

 

You can definately have celiac without either one of those two genes. I am, as previously stated, an example.

I have to agree with your husband that celiac can not be firmly ruled out, at this point, by gene testing.  What do the doctors say about that elevated test level and that it is going up? What other conditions have been ruled out by testing? Have you had an endoscopy? If so what were the results, keeping in mind there can be false negatives. Have you asked your doctor if he will diagnose you based on symptom relief and a decrease in antibodies on the diet? Being gluten free will not impact testing for other issues.  If all celiac related testing is done then you have nothing to lose by doing the diet strictly for a few months. Just be sure no more testing is desired as going back on gluten after being gluten free can be very debilitating if you are celiac.

[Posterboy]

Lissa,

Once you start taking an acid reducer . .. your biofeedback system breaks down and inflammation spreads through your whole GI tract first and finally other organs in time.

your husband is right to think you have an inflammation problem.. . the(se) research pieces are finally starting to may a complete clinical picture.

I usually try and (over explain things) but I will try and limit my explanations and just provide the research. .... we know when we get low in stomach now it triggers the body to go from anti-inflammatory to an inflammatory state (what happens when you eat gluten protein).. . and stomach acid is too low to digest it.

https://www.medicalnewstoday.com/articles/321624.php

untersmayr says this happens above a pH of 3.2 approx. . . when we loose our ability to hydrolyze/digest proteins. .. .this makes sense since a healthy adults usually never gets above a pH of 3.0 except when they eat.

https://www.jacionline.org/article/S0091-6749(08)00772-0/fulltext

taking acid reducers can make this inflammation worse see this earlier research that I linked above that showed how dysbiosis from an overgrowth of bad bacteria triggers inflammation. .. and taking acid reducers makes this worse and "locks in" our inflammation because our pH never get's  high enough to control the now toxic brew in your stomach.

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

I hope this is helpful but it is not medical advice. .. .read the whole links when you get a chance but you can skim them for now.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God