Repeat Egd/colonoscopy After 4 1/2 Years Gluten Free

[mamabear]

Well, I've been gluten-free for 4 1/2 years now.....only the rare glutening....maybe 10 times total...the last one definitely was in June of this year. I had repeat scopes a week ago , and the verdict was mild villous blunting and mild IEL in the duodenum, "consistent with treated celiac sprue".

Part of me is very happy it is better than on diagnosis(what would have been consistent with a Marsh2-3) but the rest of me was wanting all healed!!! Am I being unrealistic???????

What has been anyone else's repeat results?

BTW, 3 more unfriendly polyps, so I get yet another date for the colon in 3 years. but

[Ursa Major]

There are other things besides gluten that can cause villous blunting, like dairy and soy. Are you still consuming those? They could stop you from healing all the way if you have an intolerance to them.

Of course, maybe the damage was too great, and you have permanent damage, that is another possibility. I don't know how old you are, but the older you are when diagnosed, the higher the possibility of permanent damage.

[YoAdrianne66]

First off....CONGRATS to you on being gluten free for 4 1/2 years! It's been about the same amount of time for me too. I was diagnosed in June/2003 with Celiac Disease when I was 38 years old. I had a painful flare up that sent me to the ER and they admitted me and ran many tests and procedures. I did go ahead with the endoscopy and biopsy which proved the diagnoses 100%. This flare up was my second one I had in a year. The first time I had a painful flare up, July/2002, I went to the ER but the ER doctor was ignorant and really wasn't interested in finding out what was wrong with me and brushed it off to being just a bladder infection.

Since my diagnoses, I have gotten worse and the doctors say I am ultra or severely sensitive to gluten from what they can see off the numerous tests done over the years. The damage in my small intestines have just been progressively getting worse. I have chronic abdomenal pain, diahreah, nausea, and vomiting, that can go from tolerable to severe at any time. In the beginning, I only had flare ups once to maybe three times in a year. I've noticed within the last 2 years it has progressed up to now having them once to three times in a month with the flare ups maybe lasting a day or up to over a week when severe.

This is also with being on a gluten free diet, checking all products I use that could have gluten in it such as toothpaste, mouth wash, etc., and even checking all medications I take with the manufactures to make sure they are gluten free AND if there is any possibility of their gluten free medications to have been cross contaminated with any other gluten containing products that they might make in their plant. I found out that gluten is used in many forms of medication and the only kind that doesn't have any gluten or chance of cross contamination are by injections.

Thankfully I have been working with a pain specialist and a GI doctor who (luckily) know what I am going through and specialize in this field. I've been seeing them for a few months so far and they have had me try a various of different medications to see which works better. Last time I was in the hospital the previous doctors were seriously thinking of putting me on IV meds for at home since they worked everytime I've been in the hospital ( and that they are 100% gluten free ). But I didn't want to have a central line or pic line put in. So my new doctors understand and we've been going through "trial and error" on the different medications to find something that will help me. In the hospital although, one medication I've noticed that always helped with my severe case of celiac has been Benadryl Inj. / 50mg. I noticed that when I used it at the same time with my other medications, I felt relief faster and better compared to not taking the Benadryl Inj. with my medications. Benadryl doesn't work by itself to relieve the discomfort only with my other medications. So I did some research and found out on Benadryl's FAQ web page it does state that OTHER uses for it is also as an antispasmatic as well as for a sleep aid, and nausia. It also went on saying it doesn't contain gluten but there is a chance for cross contamination. And since I can't take Benadryl in the form of tablets, capsules, or elixor ..... I found out you can get a prescription for it in a pre made injection pen of 50mg that comes in a package of ten ( I guess kinda like an epi pen ) and also it's available in vials ( like insulin for a diabetic). This to me doesn't sound too bad if given with the right combination of my other medications (with them being in gluten free pill form). So next time, I see my doctors this is our next thing we'll be trying. Hopefully this will work. It's seems better to take a shot of Benadryl now and then with a severe flare up ........ than having to take all my medications by injections in a central/pic line.

I don't think you're being unrealistic at all because I know that once someone is able to maintain and manage a gluten free regimen you will feel healed. Keeping it under control is the key to feeling better and getting back to a normal healthier life. I've read about this so many times and hearing how so many people have been able to do this regardless of how severe someone has the disease. I wish you all the best and good luck on your future test! I hope I'll be able to find a way to get mine under control soon so I can regain my life back as well.

I hope this has helped you in some way. Feel free to contact me if you have any questions.

[Lisa]

Well, I've been gluten-free for 4 1/2 years now.....only the rare glutening....maybe 10 times total...the last one definitely was in June of this year. I had repeat scopes a week ago , and the verdict was mild villous blunting and mild IEL in the duodenum, "consistent with treated celiac sprue".

Part of me is very happy it is better than on diagnosis(what would have been consistent with a Marsh2-3) but the rest of me was wanting all healed!!! Am I being unrealistic???????

What has been anyone else's repeat results?

BTW, 3 more unfriendly polyps, so I get yet another date for the colon in 3 years. but

Hey mamabear,

To be honest, I am very surprised that after 4 1/2 years, you aren't completely healed. Although, it's evident that progress is being made. Have you considered what Ursa Major mentioned that soy and dairy may play a role here. I don't know that I have ever seen any studies that link burnt/blunted villi with other causes other than gluten celiac. I would be VERY interested in that for personal reasons as well (other causes for destruction of the villi)

Continued progress for you.

[sandyg]

Well, I've been gluten-free for 4 1/2 years now.....only the rare glutening....maybe 10 times total...the last one definitely was in June of this year. I had repeat scopes a week ago , and the verdict was mild villous blunting and mild IEL in the duodenum, "consistent with treated celiac sprue".

Part of me is very happy it is better than on diagnosis(what would have been consistent with a Marsh2-3) but the rest of me was wanting all healed!!! Am I being unrealistic???????

What has been anyone else's repeat results?

BTW, 3 more unfriendly polyps, so I get yet another date for the colon in 3 years. but

Your results are making me rethink my plan to have a repeat EGD after 1 year of gluten free. What are the chances I could go from "total villous atrophy" to healed in 1 yr? Not to pry, but have your antibodies been normal during the past 4 years? It's hard for me to wrap my brain around the idea that 10 glutenings could hinder healing that much. . . On a positive note, your results have improved from diagnosis!!!!!! That's for sure. I was also wondering how the GI doc felt about these results. Is he/she satisfied? Are there plans to repeat the endo in the future?

Sandy

[babygirl1234]

i just had both done last year for the cramps and D i had and they found a few plopys, the doctor left the one in my stomach she wants to redo the scoop down my throth she wants to get it and make sure it didnt grow btw it was neg for anything

[Ursa Major]

Hey mamabear,

To be honest, I am very surprised that after 4 1/2 years, you aren't completely healed. Although, it's evident that progress is being made. Have you considered what Ursa Major mentioned that soy and dairy may play a role here. I don't know that I have ever seen any studies that link burnt/blunted villi with other causes other than gluten celiac. I would be VERY interested in that for personal reasons as well (other causes for destruction of the villi)

Continued progress for you.

I did a little research for you (okay, several hours worth ). Here are some links with quotes from those articles that might interest you.

Open Original Shared Link

Open Original Shared Link

Most gastrointestinal problems connected to soy formula involve non-IgE delayed immune reactions. However, local IgE reactions may contribute to these problems by triggering the formation of immune complexes that alter the permeability of the gut mucosa. As C Carini, the lead author in an Annals of Allegy study, wrote, "The resultant delayed onset symptoms could be viewed as a form of serum sickness with few or many target organs affected".

The baby's small intestine is at special risk. Scanning electron microscopy and biopsies have revealed severe damage to the small intestine, including flattening and wasting away of the projections (known as villi) and cellular overgrowth of the pits (known as crypts). Allergic reaction may not be the sole cause here as the observed destruction dovetails with that caused by soy antinutrients known as lectins and saponins, with the lectins possibly doing double duty as allergic proteins. (See Chapter14). Villi are the projections clustered over the entire mucous surface of the small intestine where nutrient absorption takes place. Flattening and atrophy of the villi lead to malnutrition and failure to thrive, with a clinical picture very similar to that found in children and adults afflicted with celiac disease.

Celiac disease is a serious malabsorption syndrome most commonly associated with gluten (a protein fraction found in wheat and some other grains) and dairy intolerance. Few people know that there is also a connection with soy. Some adults with celiac disease experience diarrhea, headache, nausea and flatulence even on a gluten-free diet when they eat a tiny amount of soy. And a study of 98 infants and children with multiple gastrointestinal allergies revealed that 62 percent had both soy and milk allergies and 35 percent both soy and gluten.

Open Original Shared Link

Causes of intestinal villous atrophy that may resemble celiac sprue

Post-gastroenteritis

Giardiasis (in the setting of hypogammaglobulinemia)

Peptic duodenitis (including Zollinger-Ellison syndrome)

Crohn’s disease

Small intestinal bacterial overgrowth

Eosinophilic enteritis

Radiation or cytotoxic chemotherapy

Tropical sprue

Severe malnutrition

Diffuse small intestinal lymphoma

Graft versus host disease

Hypogammaglobulinemia

Alpha chain disease

Open Original Shared Link

o Food-induced enteropathy: Cow's milk proteins and soy proteins can cause an uncommon syndrome of chronic diarrhea, weight loss, and failure to thrive, similar to that appearing in celiac disease. Vomiting is present in up to two thirds of patients. Small bowel biopsy shows an enteropathy of variable degrees with villous hypotrophy. Total mucosal atrophy, histologically indistinguishable from celiac disease, is a frequent finding. Intestinal protein and blood losses can aggravate the hypoalbuminemia and anemia that are frequently observed in this syndrome. The nonceliac food-induced enteropathy has been less frequent and less severe in the last 25 years. Cases more recently described involve patients who tend to present with patchy intestinal lesions. Usually, the syndrome affects infants in the first months of life.

[Lisa]

Ursa, thank you for your very time consuming links. They are much appreciated! I am sure mamabear will find them interesting as well.

[mamabear]

Many thanks to all who answered. Unfortunately I did not have any antibodies checked at the time of biopsy....guess I was asleep at the wheel for that one. The GI didn't think to check them, and I was so stunned when he said celiac that all I did that night was internet research for what to do the next day. I did have the antibodies....complete panel except for Immunoglobulin A done earlier this year and they were all negative. I think a long time ago, I had a serum immunoglobulin done which showed low Ig A.

Ursa, thanks for your input. I hate to think it might be dairy, but you might have hit on something. When I was a kid, I hated milk...wouldn't drink it,threw up on my dad when he tried to force me to drink it. Cheese, ice cream,yogurt was not a problem. Hated butter,too. It's frustrating to think that the only way to doublecheck the results would be another EGD. I really figured after 4 months of 2-5 BM's a day that the pathology wouldn't be A-OK.....so maybe it WOULD have been, if I hadn't taken the risk of a restaurant I didn't know. I had french fries,grilled grouper and salad that day. Got sick with D,cramps,back pain,charleyhorses. I figured it was the fries. It did start improving over the past month, but I didn't have enough time to finish improving before the scopes.

I spoke with the GI this morning.....he called to follow up on the results. He will be helpful in a repeat EGD, but he really didn't have anything else to offer. I will repeat iron, iron binding capacity,vit D,calcium,B12,folate,chem panel, cbc to see if anything is slipping. Need to do my bone density,too.......last one 2 years ago was normal. Also I am losing weight again..not such a bad thing for me, but it's happening too easily.

I do take some relief in that it was better. Some of us on the forum are not so fortunate. I also have the added weight of being 6 1/2 years after kidney cancer, so that weighs in on my mind from time to time.

Once again, many,many thanks to all who responded.